A rush to dying


34 hours before he died, Alan became anxious and agitated.  At home, on hospice, he would no longer stay in bed, but kept climbing out, stumbling to the floor, trying to get away.  Despite the gentle words of his wife and daughter, always at his bedside, despite multiple visits from hospice and accelerating narcotic doses, he could not be calmed. Finally, exhausted, in the 2:00am darkness, the family called 911.  Suddenly, a flame extinguished, still in the house he loved, Alan died.

End-of-Life experts call it “terminal agitation;” a burst of activity, usually with confusion, and perhaps pain, at the end of life.  Medically, it signals a final event such as an overwhelming infection like pneumonia, an obvious or hidden bleeding, a massive stroke or perhaps a blood clot to the lung.  Patients, who have decided to end their life focusing on comfort and peace, are thrust, with their families, into an emotional crescendo of movement, bizarre behavior and turmoil.  Terminal restlessness, delirium or agitation, is different from a simple medical problem, such as constipation, urinary retention or other easily fixed difficulty.  Terminal agitation is dying.

This devastating change places a terrible burden on patients, but even more can overwhelm families and result not only in immediate tumult, but in long term guilt.  After agreeing on hospice, and a palliative care approach, loved ones hope and may expect that the patient will gradually fade and, perhaps with the assistance of mild sedation, die peaceably.  Instead, what happens to patients who experience terminal agitation is a blast of fear, excitement, out of control symptoms and emotional exhaustion.

“Are we doing the right thing?” Perhaps the increase in activity and change in symptom means aggressive medical intervention is required.  Maybe the hospital or an intensive care unit can do a better job.  Not seeing the “quality of life” they imagined and with the patient agitated and not communicating, tempers rise, prior decisions are questioned and even the support of hospice may be seen as “euthanasia” or simply not caring.  Bad choices are made in the moment, resulting in anger and guilt, which poison the years to come.

Faced with an abrupt change in a patient’s condition, and with frightened family members pressing for answers, even doctors may find themselves questioning prior diagnoses and may be tempted to give aggressive care.  Patients, who have been receiving hospice and palliative care for months, are rushed to emergency rooms, CT scanners and undergo complex therapy, even surgery.  Losing sight of the presence of an incurable advanced illness, physicians may try to fix the new calamitous crisis.

The key to handling the potentially devastating impact of complex end of life events is pre-education and planning.  No matter what the disease, cancer, ALS, Alzheimer’s, some single event must occur for life to end.  A vital system must fail.  The original disease directly or indirectly, causes the final change, and even if we are able to “fix” the new problem, the primary illness is still present. That fatal failure of function results in catastrophic collapse of the body and that may yield agitation, shortness of breath or pain, on the way to causing death.

Families must be informed that when the final hours arrive, death may take this form.  Emotionally, friends and loved ones must be ready.  Everyone needs to talk and understand, ahead of time, that the last days or hours of life may not be easy.  Our bodies do not pass easily from this life, and may flail.  In your heart, be ready.

When such an event happens, good communication with the patient’s doctor and hospice staff can help everyone cope with what is happening.  In addition, they need to understand that the medicines or methods that doctors or nurses use in an attempt to give comfort are not themselves fatal.  While narcotics or sedatives may be accelerated, it is in response to terrible symptoms, not the cause.  Many believe that a “morphine drip” is a fatal event which itself causes death. Rather, the event, which is occurring is the cause of the end, and morphine is an attempt to smooth that passing.

Much has been written about the dream of “a good death.”  What we really mean is a “good life” until the end.  For ourselves and those we love, we hope that the last hours will be gentle and that death will come as a fall breeze through dry leaves, a silent sunset. However, sometimes, the end comes like a storm, screaming in the night, blocking out the light, trying to toss us apart.  Stand together. Comfort each other. Remember your love.



  • gopja
    Thank you for this. Sometimes symptom management is like walking a tightrope.
  • Peg
    Dr. Salwitz - Your sharings are often enlightening and necessary to be told. This one especially. Thank you.
    • James Salwitz, MD
      Thank you very much, jcs
      • Sandra Farrell
        My Husband died on September 25th in the Hospice where I slept with him till the end ,all you have wrote as comforted me greatly . He died peacefully with the drugs etc after a bout of agitation . Even though we being Christians and knowing now where he is , I still needed to know more about the agitation ,thank you for this and God Bless you .x
        • Marilyn
          I experience the same. My husband passed on on September 23rd after a massive stroke. He was somewhat alert for the first couple of days then slept a lot but had the agitation intermittently trying to sit up, pull out feeding tube from his nose, put his legs out to sides of bed when he couldn't walk. Then he made a turn for the worse having breathing problems. The next CT scAn showed the stroke doubling in size. I and daughter and son were given the choice of life support or DNR on morphine drip. After much discussion and reluctance on my part the latter choice was made. I felt like I was pushed against the wall to make a FAST decision by hospital staff. He passed peacefully on the day after his meds were stopped and morphine administered. I felt and still was feeling guilt. I am so thankful for you, Dr. Salwitz. After reading what you wrote as well as others I feel a lot better. As Sandra said, God Bless you.
      • Deb
        Thank you so much for this information. In January my father died at home. He went thru this terminal agitation for days without us understanding what was happening. It led to family consternation and recriminations about how to honor his wishes and accommodate him. It left us a bruised and fractured family. This information relieves some lingering guilt and sadness from those difficult days before his passing.
        • Joanne
          Yes, they should put something out on terminal agitation..I posted here some time ago and my father had terminal agitation 4 hours before he passed but now that I think about it he probably had it at home too right before we had to put him in hospice outside our home. He would get into anger fits about 4 days before he went in on his final day. It was very sad to witness, my mother tried to do everything, he wanted to get up out of bed even though his legs had not moved in weeks, he raised his arms up in the sky and yelled , he would turn side to side and ask my mom for cushions for his back and arms... I never knew about terminal agitation but it is excruciating to watch. I miss my dad every day, the hospice he was put into that last day was wonderful, we couldn't have asked for better nurses especially because he was bleeding alot and they took such care of him. I will never forget those last weeks before my fathers death, especially the last day. It has changed me as a human being. I miss him so bad it hurts. I pray every day for him and won't ever ever forget him.
      • Joseph Russo, M.D.
        Dr,. I am a physician and my father recently passed away in terminal delirium. My wife sat vigil while I was on the phone with her constantly, unable to be by their sides, because of work commitments. I have never experienced such a gut wrenching event, even as a physician. AS NOVICES THRU THIS TERRIBLE EVENT, I WISH WE HAD KNOWN OF YOUR ARTICLE, PREVIOUSY. Even now you have helped me post event. Thank you for your insight. Joseph Russo, M.D.
      • Kris stoltz
        Very informative, comforting and cute..
  • I appreciate your candor and honest approach to the questions most of us are too afraid to ask. This was my experience of my mother's last hours. Fortunately, the palliative care team was present and guided me. While not a storm, she became quite agitated, worried about her oxygen and wanting to get up. While it was not easy, I am so grateful that I was present with her. I promised her she would not die alone. The experience, while not easy, has made me more aware of the true process and like it or not, it is life...and death.
    • James Salwitz, MD
      I am really glad that the palliative care team was able to support you and your mother through what can be such a difficult time. I am am often distressed when I hear painful stories about out-of-control end of life events, and the emotional damage those experiences leave behind. I am still sorry for your loss. jcs
  • Gerda Yeskevich
    I too experienced this with my husband. He kept trying to get up in his very weak state with confusion and was making hand gestures to apparently others that have passed. As much as I wanted to keep him home for his passing it wasn't possible to handle alone (hospice could only be there for 1-hour a day). Regretfully (STILL feel guilty about to this day), he had to go to the hospital for his last hours - but thankfully he was made comfortable with the help of staff and meds and for I to be there at his side. Just wish I knew ahead of time this process would take place as the end drew near - it's not as you see in the movies with just closing your eyes peacefully. It's helpful to read that what he and I experienced was not normal. Thank you for your blog - your writing is such a helpful insight of information.
    • James Salwitz, MD
      You obviously made the hard, but right decision, to get him to a place where he would not suffer. You put his need for comfort ahead of the "ideal" good death, dying at home. If you had not moved him to the hospital, both him and you would have had terrible problems in those last hours. Sometimes we best express our love and compassion by making the toughest choice. jcs
    • Gerda Yeskevich
      Typo....I meant to say "what he and I experienced WAS normal".
  • Peter
    Well described !! I experienced a very similar scenario of "terminal agigatation" during my 95 yr old mother's last 12 days at her home in 2011. It certainly did not appear to follow the "Hollywood script" of the dying process. Hospice staff understood and explained, but the reality (24/7) was still shocking. Interestingly enough, I did not get a sense of her suffering or being in pain -- but there was no consciousness in the duration, so no way to confirm the underlying mysteries of her dying.
    • James Salwitz, MD
      Sometimes the sudden unexpected loss of communication with the person who is dying, can add even more stress to a difficult time. I am reassured that she did not seem to suffer. jcs
  • Sometimes it can help the patient, too, to be told that this is one way life can end. Thanks so much for reminding us that the body wants to live, no matter what no longer works. Some patients I have known have tried to "go home," getting out of bed and trying to walk, even though they were "home" at the time. One who was quite coherent described "home" in terms that his brother recognized as the house the family lived in when the boys were quite little - and hadn't visited in more than 75 years.
    • James Salwitz, MD
      It is remarkable how many times I have seen patients at the end of their lives trying to reach another place and occassionally seem to connect to others who are already there. jcs
  • Debbie H
    Thank you for this much needed post Jim. I'm sure it will help many. As much as I did for both of my parents, the guilt is always there.
    • James Salwitz, MD
      I can tell you that all you gave from the deepest place in your heart was more than enough, and that you have not reason at all for guilt, but I understand that we can never seem to give enough to fill the need we have to share our love, and the loss is still so great. With time we learn to cope with the pain, although somewhere it is always part of us. jcs
      • Kathryn cleary
        My dad was in a care home for five weeks before he died and most of the time all he ever said was help help help it was like a chant I used to ask him what he wanted but he would never answer me
  • Barbara R
    Thank you for your explanation. I saw the agitation with my father and it was hard to reassure him. It seemed as though he wanted to get out of bed and run. No one in the family was told that this would be part of the process. Both parents are missed but both left this world differently. Dad had a defibrillator and we thought it might be holding him back but nothing was explained to us.
    • James Salwitz, MD
      I hope it helped. It can be a very disturbing experience which can cast a shadow on good memories. jcs
  • Ray Nolan
    While I have found all your blogs illuminating this one really 'caught' me. Frankly it made me fearful of 'terminal agitation' in our case. I have always wanted to know as much as possible about the details of various illnesses and procedures in my own case as well as my partner's. After reading the blog and thinking a while I realize this is just another 'procedure'. The more I understand it the easier it is to accept. I have to say I hope in our case this does not apply but if it does having you on board will make it easier to bear. Thanks for dealing with a difficult subject is your typically direct and honest way. Ray
  • Kathleen Walsh
    Jim, Recently re connected w a friend from Scouting-Janet and Ira. I was their son's mentor in BSA. She said you saved her life. So glad to hear that. This blog of yours was needed-thank you for sending it out. Your honesty and compassion with others is amazing. Cousin Kathy
    • James Salwitz, MD
      Great to hear from you. It has been too long. Thank you very much for your comment. Regards to all, jcs
  • Heidi
    I seem to be going through this right now with my dad. He is seeing people, agitated, singing, twitching, wanting to go home (we live in the home he grew up in.) He hasn/t slept all night. I have called hospice and the medicine worked for one night, but not the next. I have asked for his hospice nurse to come out today as I need help with knowing what to do. Thank you for your article. It is helping explain a very challenging time we are experiencing right now.
    • James Salwitz, MD
      Sounds like a very tough time. Hang in there. Hospice should be able to help. One of the most important thing he needs is just having you near. jcs
  • Paul
    Wow, thank you for writing this doctor. As someone who just witnessed an extreme case of this, your words bring untold comfort. Thank you for what you do. God Bless all the doctors, nurses and aides who provide this type of care, as I remind those who help my uncle through this, you are angels on earth.
  • I am reading this as I sit in the middle of the night praying that my mother stays asleep. I hate myself for thinking this, but the agitation, the anger, the trying to get up has taken its toll. My mother was also a nurse, so she lashes out at our attempts to make her comfortable or keep her in bed. My grandfather passes away from cancer in the hospital. Selfishly, I wish we could have done this for my mom. She was happy to return home and receive hospice care, but most of the time it has been my father doing all the work and I flew home to help during this last few days/weeks, we don't know. Thank you for showing me, we aren't alone.
    • James Salwitz, MD
      The decisions we make during these times are always very hard. Sometimes it is just enough to move one step at a time, forward. Hang in there. I hope you mother rests. I am glad you can be there, even if not as much as you might wish. jcs
  • Hello Doctor Salwitz. My Dad passed just a couple of weeks ago. We too experienced what you describe. Unfortunately, he already had some dementia which made it more difficult to understand what was going on. His agitation and restlessness, and anger at times, lasted for weeks, not days. He also had times of hallucinating where he would reach or speak to those already deceased. All of this fluctuated during this time. Can this type of agitation and restlessness last weeks? Or is this attributed to something else? In any event, it was very distressing. Thank you for writing about this end of life symptom.
  • tracey
    I am experiencing this right now with my mother. It has been going on for 3 weeks, she lashed out at her 22 year old granddaughter this week, she appears to have become quite strong and angry. She demands flood and then eats, she really hasn't eaten in a couple of weeks before this started, she feels wronged and we all make up lies about her. Haldol, every 4 hours has calmed her but she is still delusional. How long can this last?
    • James Salwitz, MD
      Sounds like a really tough time. I am glad the Haldol is taking the edge off. While extremely variable, such periods of emotional turmoil usually indicate a deteriorating situation and therefore may not last long. Make sure her primary physician is aware, as sometimes there is something that can be "fixed" to make things easier. Hang in there, though it does require infinite patience. jcs
  • Hello Doctor Salwitz. My Dad passed just a couple of weeks ago. We too experienced what you describe. Unfortunately, he already had some dementia which made it more difficult to understand what was going on. His agitation and restlessness, and anger at times, lasted for weeks, not days. He also had times of hallucinating where he would reach or speak to those already deceased. All of this fluctuated during this time. Can this type of agitation and restlessness last weeks? Or is this attributed to something else? In any event, it was very distressing. Thank you for writing about this end of life symptom.
  • Susan Varner.
    Thank you for this post, Dr. I am a Registered Nurse working in a long-term care facility and at the moment we're all experiencing, as nurses, a very distressing time with a resident who is going through terminal restlessness as diagnosed by the Hospice team. We're having some conflicting thoughts - some of the nurses feel that Hospice are right, and we should just try to keep him settled with Haldol and oxycodone. Others of us feel Hospice have been too quick to discontinue some of his scheduled meds including his diuretics (he has some degree of renal failure but is still passing urine) and his diabetic meds - insulin and metformin. Those of us in this camp wonder if it's the toxicity build up that could be causing the restless, agitated symptoms. He had been refusing his medications for only two days when Hospice stopped everything, and had gone through short periods of refusal before only to improve and start taking his meds again. Could lack of diuretics and insulin cause such symptoms? And even for Hospice patients, wouldn't they be considered "comfort" meds until the resident is in the final dying phase? I'm not asking you to take sides! :) Just looking for some sort of answer to the dilemma. Some of us feel that the resident is almost being "euthenised" rather than "comforted". Thank you for any reply you can give, and thank you for your article.
  • Tammy
    Thank you for posting. We are going through this very thing with my dear mother-in-law. She is in our home, so we we can care for her as she is dying from stage 4 lung cancer. She suffered from anxiety all her life. We have been on an emotional roller coaster attempting to keep her calm and comfortable.
  • Apologies... when I said "euthanised", I meant restrained.
  • Susan Varner.
    Never mind. The resident died yesterday.
  • What a lovely post. My father is currently going through this agitation and this post helps me to understand and accept. Very well written, poetic even, and simple enough for me to understand during this sad and confusing time. Thank you.
  • Sandy
    My dad passed away three weeks ago. I now understand what was going on. He had terminal agitation for 3 months. He was afraid to be alone. He was unable to walk and was constantly asking us to move him. A very strange thing...he kept asking us to pull him up so his head was almost touching the headboard. It was exhausting.
  • Sherry
    Finding this information has helped me understand what is going on with my Father. I have been second guessing the hospice team, worrying that something else must be wrong with my Dad. It is reassuring to hear other families' experience with this distressing behavior. My Dad had been going through sporadic but brief episodes of hallucinations, agitation and non stop talking for several months. Now with this last episode, it has not abated for 14 days. I am a nurse myself and have never seen anyone exerience terminal agitation. Thank you for your caring , compassion and explanation of this process.
  • Tracy
    This is the most helpful place I have found. My 68 yr old husband is in hospice care for COPD. I envisioned a peaceful slipping away, but he has been agitated and hallucinating for almost 2 months. I could no longer care for him at home due to his constant insistence on getting up and trying to move. He has not had food now in 2 weeks and no water for 1 week. And still he heaves himself upward, trying to get up, about once every 10 minutes. He works himself sideways in the bed with his feet on the floor, over a course of about 3 hours, over and over and over. I don't know how he does it. It is horrifying and exhausting, and even thought I want to sit with him and comfort him, sometimes I have to leave because I can't bear to watch it anymore. He is receiving liquid morphine, Ativan, and Halidol and yet is rarely still for more than 10-15 minutes.
    • Darlene
      Oh my goodness Tracy, you have described almost exactly what happened to my dad who passed away 4 weeks ago. No matter what he was prescribed, he would move from the bed to his chair in the living room every 10 mins. My mum and I were exhausted, and bewildered at what was going on. We too, had thought he would pass quietly in his sleep after fighting cancer for 16 years and being 81. He had not had a proper amount of food for months and only sips of water for weeks, was on valium, oxycontine etc and was still moving. No one had told us about Terminal restlessness, and we, like you, were feeling such anguish at watching him. He went back to hospital when we realised we could no longer cope, was put on morphine after 24 hours, as the Dr realised how bad he had got and he was still moving. He passed away 3 days later. I am finding slight relief in reading these posts, and understanding that this is how many people spend their last months, weeks, or days, and that dad was cared for....
      • Tracy
        Hello Darlene, There is some comfort in knowing that you are not alone, yes? There needs to be more knowledge put out there about Terminal Agitation, as it is truly awful to watch and try to help your loved one get through. My husband passed away 2 days after I posted, and only quit trying to get up the very last day. He had not had fluids in a full 10 days. I still wonder what was driving it, and if I could have done more to help. I hope you are doing OK and send prayers for healing and comfort.
      • Joyce peterson
        It is hard to read all these heartbreaking words, but i am thankful to read about this before possibly experiencing it with my mother. But i have a question for everybody, How many of these patients that experienced the wanting to get out of bed were on Ativan? When Tracy mentioned it, it reminded me of the only time i slept walked was on Ativan. I thought i was lying down but the nurses kept yelling at me to stay in bed. And then an elderly friend who was dying kept kicking her legs during sleep and would wake suddenly screaming. I asked the nurses to change off of Ativan, i begged them to just try it one night to see if it improved her quality of sleep. But they wouldnt. It was sad.
        • tracey
          My mother was on Haldol and Ativan, she never slowed down until the very end. I wish I knew about this syndrome because I am still left feeling anger about the last couple of months. Hospice never even mentioned the term until it had been going on for almost 7 weeks, I wish I was more educated.
        • My mother in law died of cancer three years ago...she was not on ANY medications and experience this terminal agitation. It is definitely not caused solely by a medication.
  • Very helpful article. My father in law is dying from kidney cancer and gas shown these symptoms in last four days. His palliative care team are wonderful and have administered something to ease him. Very hard watching him die though
  • Rose Holtman
    Thank you so much for this article. I'm going through this right now with my 72 yr old mother. She's been sick for quite a long time and the end apparently is near. This terminal agitation is the hardest thing I've witnessed. My mother has been in confusion, halusinating, crying, screaming. She keeps saying I want to fking home please take me home, she's been in a whhel chair and has been bed ridden for months now and can't walk, she tried tk get out of bed and she can't. She thrashes her head back and forth and wails her arms in discomfort. She hasntt slept in days and has stopped eating 10 days ago. She was taking Haldol but that has the opposite affect on her and she became worse. My mom is on hospice and they've been great. Besides the morphine, Ativan she's trying zyprexa ... I hope this comforts my mother for I can't bear to watch this suffering and agitation anymore. It's too painful.
    • James Salwitz, MD
      I am so sorry you and she have to go through this. Continue to be aggressive in the use of medications to try and give her some peace, and lean heavily on hospice. If it is really out of control, give her doctor a call. It is a very special that you have had her at home. I am certain that over the past months and weeks she deeply appreciated it. It is one of the greatest gifts you can give to another person and it is even more wonderful when we give it to someone we love. jcs
  • Mary Wilson
    My Mum is currently in a palliative care facility, this is week four, she was given 2-4 weeks to live after being diagnosed with Pancreatic cancer, she also has a blood clot on her lung and a faulty aortic valve. All meds except paracetamol, and a blood pressure tablet were stopped on admission. Mums condition went from not eating and drinking (months prior to hospitalisation) and almost comatose, to now eating and drinking. Two weeks ago I arrived to find her hallucinating and her memory severely impaired and mixed up with the past, this continues though the hallucinating has stopped. Over the past few days however Mum behaviour has changed alternating between aggression, high pitched and loud singing, talking non stop. Her language has also got colourful, sometimes in jest and other times swearing at the careers or nurses. Like some accounts of others who have posted when's she's agitated she wants to go home, even a moment of waiting for someone to attend to her needs is perceived as hours and she tries to get out of the bed, resulting her her bruising her self badly. I've read about this and can just about cope with the emotional roller coaster, however I am concerned that this could go on for many more weeks or even months, even given the original diagnosis!!
  • Laura
    My grandfather...I called him Pap...passed away this past February. I've Googled the agitation in the past, but needed to read more about it tonight. I miss him every single day & I just needed to read one more time that we did all we could & he did pass peacefully. Seeing him agitated was very frightening. He was 87, had Parkinson's & a week before he passed, he got pneumonia. My mom said if they hadn't called for an ambulance, he would have died right then. He was unresponsive at his apartment. He lost his ability to swallow so even though the pneumonia was gone, that was the end. I struggle with whether or not he should have gone to the hospital. He ended up going home on hospice & as my mom said "came home to die". The last time I got to see him, he was extremely peaceful & just slept. Early the next morning, my mom convinced my grandma to tell him it was OK to go. She said it's OK & fifteen minutes later, he passed. I'm so grateful I was there for him. I just wish I had gotten there before he was unconscious & didn't wake up. I want to believe he knew I was there, though because at one point, he moaned & I looked at him & he seemed to be looking at me. And when their pastor came to pray, my mom asked him if there's any way to know when he would pass & the pastor said it could be any time. He said sometimes the person is waiting for someone to come from out of town. When he said that, Pap squeezed my hand. I had been sitting next to him holding his hand, praying he knew I was there. I live 5 hours away from where I grew up & he still lived so it means more than words can say that he waited for me. My mom & grandma say I was his baby. I'll always be his baby. I told him (in my thoughts & then at his casket) I refuse to say goodbye. I'll see him again.
  • Lisa
    Sitting in palliative care ward ATM with my 56 yo husband that was diagnosed with lung cancer 2 months ago today . We had talked about him passing away at home and I was ok with that . We had nurses every day drawing breakthrough meds and changing his cad pump etc and everything was going ok ... Today is Tuesday . Saturday night he was really restless , the breakthroughs were not even touching him he was agitated and a little aggressive - unusual . I spoke to nurse on Sunday and she said pump the meds into him hourly as prescribed , that it was ok to do this. Sunday night 11:38pm he woke up and almost jumped over the side rail on the bed. He was ' off his tree ' on meds but talking and hallucinating . Got very fidgety . Got very very aggressive - violent . At 4am we called the nurse and asked what to do . She said that it was terminal restlessness and she would call an ambulance for us to take him to palliative care unit to help settle him . It really was distressing to see - especially for our 23yo and 19yo lucky the 10yo was sleeping . We didn't know anything about this restlessness ! If we had known , it may have been easier . Reading this article has put it all in perspective of understanding , thank you so much for that Putting him in hospital has played on my emotions so much But seeing him more peaceful here has helped me come to terms with it . They say he hasn't got long . I'm sleeping here close to his side tonight
  • sarah crooks
    my mum passed away on the 18th December 2014 the last week of her life she got this terminal agitation but sadly we wasn't told about this our family feel very let down by the medical staff for not telling us that our mum had this if we had of known we would have understood more what our mum was going through and that her life was coming to an end now we all feel guilty cos we kept telling our mum to sit down and stop getting up we didn't find out about it till after our mum passed my brother looked it up on the internet other wise we still wouldn't have known about this palliative care should tell all familys that this may happen to there loved ones
    • Lisa
      Hi Sarah , I'm so sorry for your loss . My husband passed away the day after I posted to this forum , on the 7th January That whole restlessness was very hard to go through . I understand your pain immensely . The last night at home before my hubby went to palliative care was the worst night - my 19yo held his father down so as he couldn't hurt me . I didn't want that to be the last memory he had of his dad so I took all three kids to see him in the hospital to see he was now peaceful . I totally feel the need to let others know of this restlessness . I have spoken to our home visiting nurses that came to us every day while we cared for Chris at home and I still don't think they 'get' it . The understanding of it and then when it happens all falls into place now and would of been so much easier at the time. Please try to find a way to stop the guilt feeling - it's not your fault at all . Take care and my thoughts are with you and your family x
  • Anne
    Well, I guess we all need informing of terminal agitation as a strong possibility when a loved one is dying. Though I suppose we could figure it out for ourselves, if we imagine what someone's body and brain is going through when everything is out of balance and shutting down for the last time, probably full of all sorts of drugs too.The body just wants to keep on moving. My father died a few months ago aged 92, in hospital for the last 2 weeks only. Though his body had been packing up on him for a few weeks previously in particular his kidneys. On his last night he was really agitated and I would have said delirious though he didn't record a high temperature (apparently old people don't??), he was reliving old experiences from when he was young and joining the RAF, on a train, losing his coat, all a bit frantic, he wasn't comfortable and he wasn't the person I knew. Agitated is a good description and the only release from it was when my dad died 9 hours later.
  • lizanne gallardo
    My father passed from this on April 29th 2015. My father wanted to pass away at home and all 7 of his children an 84 yr old wife did everything we could. The social worker from hospice came in told us they wanted to take him to regulate his medications and he would be back home in 5 days. If only we knew that this was terminal agitation we would never let him go. Now the what if's are in our head's and the blame on you you and you are in our vocabulary
  • J. King
    Hospice doped our Mama so heavily there was no Terminal Agitation as you call it. She would turn her head away when her husband (not our father) dosed her up. During Hospice she had NO waking moments. No interaction during the last 92 days of her life. Lying comatose in the living room of her home. It was sheer torture for me, and my daughter. She was able to escape to work during the day. I was there....trapped, watching her slowly die.....I hate Hospice and would never recommend it to anyone. EVER.
  • Sharon
    Finally the article I've been looking for, my sister, 47, had been doing this for 15 days
  • lina
    Yeah I am going through this right now. My dad became unresponsive to the home care workers. He slept for three days. Then lost his swallowing reflex the doctor said they could try feed him but he would choke to death or put a feeling tube but he would not be able to come home. So we decided to leave him as he was over the weekend. Yes he said he was leaving seen his relatives and friends that have passed was very agitated and delirious. After ten ten days of not eating or drinking he's eating again but still delirious he is very restless and barely sleeping. He is 84 years old on dialysis for six years now. I don't understand I was sure he was dying but is now eating and drinking again after ten days. Is this a stage of death. He told us he was passing away.
    • Laura
      That is odd, Lina. Maybe his passed loved ones just said, "Not yet". You are blessed to have him & that he is eating again. I'd call it a miracle actually. When my grandmother passed, we were told the swallowing reflex was a sure sign it was time. I'm still grieving my grandfather so it's hard to even write about him, but that was the " last straw" for him, too. Cherish any last moments you have.
      • Anne
        My dad who passed away aged 92 last December had increasing difficulty in swallowing for many months before he died, even when he was living in his own home and still independent. I think it's called dysphragia or something similar. He managed it because he was totally mentally competent. Totally different from his last few days. My own very limited experience ( father, mother, sister) is of uncontrollable infections that antibiotics were hardly touching which caused their delirium/ agitation. Having been with each of them, I found their delirium a 'blessing'.
        • Laura
          My grandfather had difficulty swallowing for months. In the days before his passing, the swallowing had stopped completely. The doctor wanted to place a feeding tube, but he didn't want that. He chose hospice instead & passed within a week.
  • lina
    Thanks. Yes I am very grateful he still here. But kills me to see him suffering.
  • Joanne
    My father had terminal agitation possible a few weeks before but badly the last hours... It's such a hard thing to witness and his brain was so sharp which made it even worse.. I love him so much but these last few weeks with him will haunt me forever.. Hospice was wonderful, he wanted to die so badly in his home but sadly the last day he was bleeding so badly we had no choice but a hospice care center, I promised him he would come home and am ridden with guilt that he passed away the next day.. I promised him and I think about it every day it just won't leave my mind.
    • Cindy Kapalko
      I too had a similar situation with my dad. He was 87 years old with a sharp mind. His last 3 months were very tough. He was in a rehab and had a fear we were going to leave him there. We did bring him home and we did finally put him on hospice. We told him he would not go back to the hospital. But something happened that made it impossible to keep him home. He died in the hospital 3 days later. My family is also haunted by those days. He did not die peacefully. It was hard to watch. We did the best we could at the time. And so did you. Please don't allow guilt to take over. I know my dad is looking down knowing that we loved him so much. Know that your dad is also looking down knowing how much you love him and that you did everything you could for him. He knows that now.
      • Joanne
        Thank you so much for your kind words. It's just so hard trying to give them what he really wanted which was to die at home, he looked at me that last night before he went in and the nurse came because of his bleeding and he said please I want my last breath here.. I promised him it would be and I keep reassuring myself we did all we could do, but those thoughts of sadness and the "did I really do everything possible" keep creeping in. I loved him so much, I know how much he loved me too but I can't help but feel I let him down. Thank you again for your kind words.
  • lina
    Of course you really did all you could. Cherish those last days don't let it haunt you. Your dad is at peace now...
  • Donna Diamond
    Thankyou so much for this article! My mother was sent home from the hospital after being in & out a few times for CHF, with palative care. Within two weeks she was under hospice care as she didn't want to go to the hospital anymore. We took care of her at home with the help of home hospice for a few weeks. It got to where we could no longer handle the 24/7 care she needed. The hispice nurse said we shoukd co sider impatient care & advised ue to take advantage of the 5 day respute care. We sent her to a impatient hospice facility for respite care. After the five days they asked if we were planning on bringing her back home, transferring her to another facility or leaving her there. We told the doctor we didn't think we could handle her at home on our own & asked if he thought she was really ready for impatient hospice. He said she was in CHF & also had 2 leaky valves & he said he felt she was ready & was where she belonged. I asked how long he thought she had as it was expensive & not covered by insurance & funds were limited. He said no one can say for sure but he felt no more than a few weeks. So we decided to keep her there. The 5 days of respite care was paid for my medicare. Four weeks later death is still not imminent. In fact she had several rebounds! Which I know happens. Good news! He said enjoy your time with her it won't last. It didnt. However she had several of these rebounds. I asked do you think she is really not ready, do you think we may have jumped the gun? He didn't think so. After 4 weeks, at $350 days & no end in sight & no idea as to how long this could go on, we had no chouce but to look for another facility. It was a heartbreaki g decision because she received such great care there! So we moved her to a nursing home. Which was $235 a day. OK enough background, just trying g to convey how heart wrenching this whole experience has been. Also we were at the hospice facility all day everyday & most evenings! Anyhow moving on to the true purose of this post. Mom is still in the nursing home & is going through this terminal agitation you explained. I had never heard the term before. The hospice nurse this afternoon said she thought it was terminal agitation. She asked if this had gone on at the other facikity. I told her yes but not as bad that the meds cal ed her down & when they wore off she would become very agitated & her Co ditto would repeat the pattern. However she has been so much worse since she came to the new faculity. The meds don't seem to be controlling her agitation. She is much worse, grabbing us or the air, crying & screaming it hurts, pulling herself to a sitting position & getting her legs off the bed & trying to get out. She has not walked in like 6 or 7 weeks & can't bear weight. She went from 197 lbs. to 176 probably less now. She is barely eating anything & not drinking much. Today is the first day she is cursing at us for not getting g her out of bed. She was too busy pulling herself up\ trying to get out & crying out in pain & agony! We sit there & cry all day & on the drive home & cry ourselves to sleep. Everyone has different opinions & is fighting & disagreeing on her treatment & decisions that have been made. Although I am still devastated by this process & the fact that I have been lighting candles & praying for God to just take her, I thankyou for this article. I wish I would have heard about it sooner. Mom is still hanging on but I do believe this has helped me to understand it better! How long can this process last. The nurse wasn't even sure if this was it because she said it usually only lasted a day or two. Today was deffinitely the worse day but it's been a long g haul! You should really consider printing something up on this to put in the hospice pamphlet they give out, it would be so helpful! God bless you & thank you! I think I can face tomorrow a little easier!
    • Donna
      How long does that take?
  • lina
    We dont know how long it takes. My dad has been out of hospital for a month now and placed back in the home. He still sees people that have passed and keeps saying he's leaving. It is so hard to see him like this. I heard it can be six months. I don't want him to leave but I sure hate to see him this way.
  • Brenda Rushka
    Hello Dr. Salwitz - I came across this post as I am trying to find answers to my fathers situation. He is 91, diagnosed with multiple myeloma (advanced) just 6 months ago. After unsuccessful chemo we stopped treatment and dad chose hospice care at home. His oncologist gave him 2-8 weeks without treatment. He has been doing remarkably well. He has been having good quality of life, eating, sleeping well and even put on weight. Since diagnosis he has days of confusion and others of complete lucidity. (Let me add that my father is a remarkable, bright 91 year old who has always been amazingly healthy.) recently he has been paranoid, hallucinating and even combative. After administering halidol with no effect during this last episode, hospice told us to call an ambulance. He was in the hospital 5 days. The doctor said his vital signs were perfectly normal, and his blood chemistry (kidney function, blood counts and calcium) were much improved since his diagnosis. They were trying to determine what was causing his altered mental state. They found he had a urinary tract infection which they treated. They also found evidence of a prior stroke on his cat scan but could not tell when this occurred. Since the treatment for the uti, he was completely lucid and was discharged to a nursing facility while he awaits a bed in the hospice organization that provided home care. I am overwhelmed with guilt at not bringing him back home but he was living with my sister and her husband who also have my mother (minor dementia) living with them, and the constant care (even with hospice, respite and family help) became too much for them. My question is when do we know we should let go. If his vitals are strong and stable, does that indicate death is not imminent? He had an eye infection and the uti, which we treated. The doctor also removed some Meds in case they were causing issues. Tapering of prednisone (he was on it because of the original allergic reaction to revlamid), stopped bumex (fluid retention), reduced his blood pressure med. Doctor suggested that uti, prednisone or stroke (if recent) could contribute to his behavior. But reading your article has me questioning everything.
    • Anne
      If his vital signs are strong, if his blood results have improved, if he has recovered from his UTI ( which can make the elderly behave very out of character until they recover), then death is not imminent. He's an elderly man whose body and mind are fighting off decline and illness. I would cherish this time with him.
  • D.R.G
    My dad had copd & had just made it through liver surgery, but the oxygen company said machine settings were off & turned up oxygen causing toxicity (which causes agitation). I begged my family to turn it back down, but they didn't listen & he wound up back in hospital with seizures. At this point Insurance was about exhausted, hence the hospital was pushing for hospice & my brother & sister also, so my mom (exhausted) listened to them instead of opting for a feeding-tube & trying to get the co2 out of his system using the BiPap machine. So they took him home on Christmas Eve & he died Christmas (or as I say they killed him with morphine & starvation). I filed a police report & I'm getting an attorney. So sometimes the situation is more complex, and it's not just a one-size-fits-all explanation like "terminal agitation."
    • Lisa
      D.R.G Omg I'm so sorry for your loss What a horrific life tradgy you have been through There are no words I can express to you that will make anything ' OK' So please just take care of yourself Xx
      • D.R.G
        Thank you Lisa for caring since I couldn't go to the funeral service which wad today.
        • Lisa
          You are def in my thoughts May he RIP X
  • Lina
    I don't like the term THEY KILLED HIM. That is so not true. I think I commented on this site in aug 2015. My dad was near death then. And the doctors explained to us that from his circumstances he had no quality of life. Of course there were discrepancies with my family. Everyone saying that the doctors just wanted to kill him.well my dad continued to suffer since then up to jan 17 2016. A week before he passed I went to visit him he cried so hard and said he was leaving us all. He said he couldn't stand the pain anymore. If it was only me and no bothers and sisters I would have made my dad comfortable in Aug instead watching him suffer and struggling each day. I think my family keeping him alive like that was pure cruelty. How would you like to suffer be in constant pain everyday. I will never get over the fact and the site of my sick father if I could have taken his pain away I would have. But there's always other family members involved who cant see yhe reasoning in these situations. He told me he was ready to leave. In a situation like this never tjink of yourself .
    • Kathleen
      Lina, I so agree with you that it was cruel keeping him alive but in NJ we don't have a 'right to die law" Kat
      • D.R.G
        They very much killed him by taking him off of Medical treatment right in the middle of it, and starving & dehydrating him. What gives anyone the right to say when someone is to die? That is God's call only. Just because society makes something legal doesn't make it moral (hence living-wills & hospice).
        • Laura
          I'm offended by you saying living wills & hospice are immoral. My father has a living will so that we know exactly what he wants in the case that he is unable to speak, God forbid. If he didn't have it, my sister & I would be forced to decide & possibly make him suffer, even though we don't mean to. My grandfather was in hospice because he was 87, had Parkinson's & lost his ability to swallow. Are you saying he should have stayed in the hospital, on a feeding tube, until his inevitable death? He didn't want that. Again, we ended his suffering in his way. He died with dignity. My father will, too. In my eyes & I believe God's eyes, that is 100% moral. I've read the Bible cover to cover so don't bother telling me somewhere in it, "God said" & the verse actually tells us to suffer needlessly. I don't believe such a verse exists.
  • Kim
    My mother is currently experiencing terminal restlessness. She has colon and liver cancer. Hospice explained what is going on to us and has been very helpful. One thing that we did not expect was the anger she is expressing when we don't "get her up or out of here". She doesn't seem to be in any pain but talks to people who are not there. She has been ill for three months and has not eaten much during that time. She started the restlessness yesterday. She can not swallow and is sometimes lucid but most of the time is not. She has lost 50 or 60 lbs in the last 3 months. I don't see how she can last much longer but they told us this could go on for a week or more.
    • Your Mom should accept JSUS CHRIST as her personal Lord and Savior while there is still time. Most born again Christians die peacefully.
      • Laura
        My grandparents were Christian their entire lives & passed away peacefully. You don't HAVE to be born again. I think this is the wrong place to evangelize. Just my opinion.
      • Suzanne Utts
        My husband was a born-again Christian yet suffered with "terminal agitation" for nearly 3 weeks before he died. It was awful. It is the brain dying and it misfires, and not a spiritual issue.
  • Jason
    My family and I found this post about a month ago after a hospice nurse told us about this condition. My father was diagnosed with two types of terminal cancer last July. Because of the type of cancer, tumors, his age, etc., he wasn't a candidate for surgery or full treatment. He took four weeks of radiation to provide some relief early on; however, things worsened over the next few months to the point he was no longer able to eat or drink. We were provided many estimates along the way, all of which up until the end were longer than we were told. My father was also a very stubborn fighter who continued to fight and push back on the dying process until the end, which likely extended the time in each phase of the dying process. Reading this post, and the resulting comments and experiences, was very helpful as my father developed terminal restlessness and agitation in his final few weeks. The restlessness (and my dad's stubbornness) was so bad at one point that the nurses in the hospice care center wheeled him into the nurses station one night to keep a close eye on him, as he kept trying to get up every 30 minutes and fell out of his chair and bed twice. I am extremely thankful for being able to read this post before his restlessness became significant. It gave us the knowledge of what was to come and allowed us to focus on his comfort without taking offense to anything he was saying or doing as a result. Sadly, my father passed away on March 3rd. We are, however, relieved he is no longer suffering. Thank you again for your post and for informing us of what to expect as he moved through the dying process.
  • Justine Trim
    Thank you for this amazing insightful article. Me and my sisters brought my Dad home a week ago on palliative care. We have been doubting our decision on a daily basis. The lack of sleep has been really hard, the screaming at night and the hurtful comments devastating. Reading this has put our minds at rest, we now know the reasons behind his behaviour and with the help from this website we are not alone. The guilt we have been feeling is overwhelming but we now have the courage to stick this out as a family. Judging by his restlessness and the fact he is now very wobbly on his feet his passing is sooner rather than later, we can now prepare ourselves and find the strength and courage to stay calm for him so his passing is as painless as possible. You have no idea how pleased we are to have found this information. Many thanks.
  • kirsty
    This is the most comforting article/post I have read on terminal restlessness/agitation. So incredibly difficult and sad to watch combined with the feeling of utter helplessness as my dad suffers with this for three days now. Any relative/friend hopes for a peaceful transition to death for the sufferer, we perhaps even expect it as we see it depicted so in film/media etc...All I can wish/hope for is that it ends soon for him, and he can rest and be at peace. Thank you for helping those witnessing to know this is very often part of the journey to end of life.
    • Melissa Shaia-Egle
      My mother is currently experiencing this. She is currently in a skilled nursing facility and has been very agitated for a month now. However, the last three days have been EXTREME. She is flinging herself out of bed and ripping her clothes and diaper off. She sobs and yells. She begs to go home. She often doesn't realize I am there with her and when she does, she tends to refer to me as Mama. She talks to her loved ones that have gone before her. You would think that being in a skilled nursing facility, her symptoms would be managed, however, my state strictly regulates the medication that can be administered. So the drugs that hospice would normally use are not allowed. We are making arrangements to bring her home on "constant care" through hospice. Meaning they will have an LVN there round the clock. This will allow us to give her the medications that will best help her. I am praying this works.
  • Joan Lagoulis
    Dr. Salwitz, You have clarified it all for me. My father, who had end stage terminal agitation, died in March 2016 at a hospice facility. I have felt so confused and so guilty because I believe his home hospice team did not explain in detail exactly what was going on. I am beginning grief counseling next week in an effort to seek answers to what actually happened so quickly to my father, etc. I was in shock...and still am. However you have explained it all so very clearly and have given me such relief! I am so glad I went on line to seek answers. Thank you!
  • Matt B
    Whew, this was exactly what I needed to read today. I just left from visiting my grandmother who is late stage Alzheimer's disease and has starting going into renal failure. For the past two days she's been unconscious (mostly) and hasn't talked other than grunts or mumbles not directed at anyone present in the room. She was moved to hospice yesterday and when I visited her this afternoon she had removed her gown and was very upset trying to get out of bed, picking at the sheets and blankets, and using fowl language. She calmed down after given a dose of Haldol. This immediately made me second guess the decision made to place her in hospice (thinking, if she has this much energy maybe she isn't dying and we need to do something else, though her medical team assure us otherwise) This was very helpful and comforting to me. I hope and pray for a smooth and peaceful passing for Grandma
    • Unfortunately, that is similar to my experience with my Pap (mom's father). Cherish the last moments with your Grandma. I've been told, and I believe now, that hearing is the last to go, no matter how little they heard in the last few years. So say whatever you need to & make peace with it. I know how hard this is so I'm sorry you are going thru it. I pray she passes peacefully & soon. It's heartbreaking to watch.
    • Joanne
      My father experienced terminal agitation also as I have posted before about.. when someone is dying it can be such a personal intimate experience to witness it and it never really leaves you.. My dad passed away in September 2015 and I think about it every day, what could I have done better? Did he know just how much I loved him, I knew he did but so many questions keep repeating themselves in my mind, I look up in the sky and ask him now if he's ok. I miss him so much.
  • Lynn
    My father is in home hospice care with many ailments. Copd, CAD, end stage kidney disease, diabetes to name a few. He is 77 y.ea so old. About 2 weeks ago, he started throwing the TV remote when he couldn't figure out how to work it in his confusion. It has slowly increased. Normally a kind, gentle man, suddenly everything is stupid. He is rude to myself and my sister-in-law. The other day he made a vulgar gesture to my sil that indicated he was man enough to get up on his own. He throws his water bottle, watch, remote and just seems more and more frustrated. We were told to not engage in arguments proving he was wrong and to not correct him. That helped but today, he insists on getting up and going somewhere, that he has things to do. He broke a lamp today because he couldn't figure out how to turn it on. Very agitated. It helps so much having an explanation and knowing there are other travellers on this journey. Thanks for sharing everyone!
  • Linda
    I am sitting by my mother's bed late at night listening to the gurgle of her lungs and the constant rythym of the concentrator. She became extremely agitated today after awakening from 15 hours of being unresponsive. She makes no sense, uses cuss words that I have never heard come out of her mouth and tells me I don't love her. I decided to Google "End of life agitation " and came across this article. Thank you! It was exactly what I needed to hear and has given me comfort in this last phase of her life.
  • Kandi cook
    Labeling it terminal agitation doesn't seem to cover it. What I experienced was more like someone losing their mind. They should warn people who are dealing with terminal illness about this. No one ever told me anything . I was totally unprepared to deal with it when it happened to my father six months ago. People need to know its more than someone being irritated . My dad went from being normal mentally to out of control at home under my care and hospice could not get there until the next day. I had to deal with it alone not knowing what was wrong and how to handle it . I went to say goodnight to my dad who was not bed riden and a normal functioning person and found that he had lost his mind. He had head and neck cancer which was not symptomatic. We had barely started pain meds for insomnia. I said goognight to him and he was grabbing his crotch and very upset saying he had to go to the bathroom. There was nothing wrong with him and the restroom was five feet away. I said OK pop do you want your urinal? He didn't answer so I got it for him anyway and he threw it across the room. He became more upset, yelling and screaming about needing to go so I tried to help him stand and he he couldn't . I tried the wheel chair got him to the restroom and he didn't do anything . when I got him back in bed he started it all over again. He said he had to go but fought every move to get there. I told him I needed him to stay in bed while I called his doctor and he became violent trying to hut bite and pinch me. I locked. The rails and he kicked out the side of the bed. He was yelling like someone was hurting him. He thought I was a demon pretending to be his daughter . then he would suddenly see me and ask where I had been. I had to deal with it all night until his nurse came. They put him in a medical coma and he died that way a few days later. I was the hardest thing I have ever dealt with. To see him go from normal to that in a few hours was awful.
    • Kaye
      I I had a similar situation with my mom. She saw a 'devilman' and if went on all night. Her mind wax always as sharp as a tack. When she starting seeing things, it was frightening.
  • Rachel Sigler
    My husband shared this post with me. We have cared for my 94 year old grandmother for years. She has been in the nursing home since December 2016. She has end stage Alzheimer's, End Stage Renal Failure, CHF, diabetes, macular degeneration, suffered multiple strokes and grand mal seizures, anemia, and the list goes on and on. She cannot walk and has no muscle tone at all. The end of February she started a fast decline, and she started eating less and sleeping most of the day. As of March 3rd she's only taken bites of applesauce, melted ice cream and a few sips of water a day. She is out of it 95% of the time. She can't swallow pills or even crushed pills. We put her on Hospice and because she wasn't able to get meds consistently those were discontinued and she is on Ativan and Morphine. She has had no bowel6+ Days despite meds and urine output maybe 3times since March 6th. Ativan keeps her calm when given on a regular schedule and morphine helps with her pain. However.....every day around 4am she somehow "falls" out of bed and screams for help. She talks some and is very disoriented.....throws things, etc. It seems that she has regressed to being A child ......wanted to see her mom and sister. She talks about her siblings and my grandfather and says she needs to see them. They have all be gone for many years. Then we have times where she is barely breathing and we are told it's close to the end. This article brought us peace hat we have done the right thing by moving her to hospice. This is very hard time on my grandmother and our entire family.

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