This is how things happened with my dad 11 years ago. In hospital no one talked us through what was happening. Now that I’ve lived through it I can clearly see it was end of life. My dad was actively dying and no one talked us through it until he was beginning his last breaths. Thank you so much for sharing this knowledge so freely and for caring so greatly.
that dying with a beautiful thing I I gave him permission to leave the hardest thing for me to do but I didn't want him to suffer anymore and when he passed shortly after I gave him permission permission he had the most beautiful piece on his face it was a difficult time for me and I still I'm grieving so much for him his time to go keep on doing these videos to educate us thank you
No one made it clear that my dad was dying soon or either I wouldn’t listen. All I know is that I knew it instinctively, but didn’t want to believe it.
My wife was a hospice nurse and suffered a lot of this pain of watching patients die in horrible ways because nobody wanted to face the truth. My wife unfortunately ended up with complications from surgery after a fall which cracked her jaw and she was in the ICU, sedated, on a vent for over 4 weeks. Her and I had talked about these things but in the moment all I could think about was getting her off the vent so we could talk again. For as prepared as I was for this moment having lived with somebody who talked about end of life care, I was absolutely not prepared for facing reality. It may be they only selectively heard what they wanted to hear and thought the absolute best case scenario's. Ultimately my wife's condition got worse and I had to sit back and ask what would she do? And we decided to pull life support surrounded by family. Your story brought tears to my eye because it reminded me of listening to my wife and her stories of frustration and sadness. She also would cry at times. What hospice nurses do is amazing for people and families. Please keep your spirits up and take care of you!
My father died a couple weeks ago while on hospice. Being his sole caregiver, we had plenty of talks while he was still "unbefuddled". He was full code but we knew his frail body wouldn't do well if that happened. He had Pancreatic cancer (st 4), emphysema, copd, an AAA, complicated diabetes, prostate issues, recurring UTIs, terrible hearing... the UTIs gave him dementia-like symptoms so he'd try getting dressed at 3am to "go to work"...he was very unsteady and fell several times. Broke his hip, broke his ribs, and gave himself a hell of a goose egg on his head... and even then he wanted to continue to fight every day. He didn't want to "give up" because his six month prognosis lasted 5 and a half more years. When mom died six months ago, I think the fight went out of him but he wanted to "make her proud". He didn't begin actively dying until about 3 days before he went, and fought right up until the end. Sometimes people want to fight regardless. Sometimes the people around them hate to see them suffer so they allow themselves the lie that he will get better. As a hospice nurse you can understand and feel compassion for the patient, and get frustrated that there is an "easier" way... sometimes the patient himself is the culprit. And sometimes us caregivers have no choices but to allow them the "final choice" on how they would like to go. And thats ok too. Please know that your videos changed my life. I was afraid and didn't know what to do, how to be a caregiver, what to expect... I was in a constant panic. Then I found you. You answered all my questions in small digestible bits and once I understood things, got a better perspective, I was very calm and happy to do this journey with my dad. I also gave your video links to my hospice doctor and he was blown away, and is making them mandatory watching for his nurses and any caregivers who need them. Thank you for what you do. God bless.
My Dad had colon/rectal cancer, they'd talked him into a colostomy. He then went to his eye doctor to schedule cataract surgery (VA). They informed him that by the time they could get him in, he'd be gone. He got home and asked my sister and I if we knew this...No we didn't. He went to a private eye surgeon and had one side done. Hospice got involved and he got upset because he wasn't formally told that he was at end of life except for the VA eye doctor. It wasn't until later the hospice nurse told me that he was at end of life and didn't have much longer, and asked me if I had been told that. She said it was in his file... but we weren't told. She was a Godsend and helped us through the toughest parts. Dad decided to go into a hospice center and they were wonderful.
My Sister was a volunteer at a hospice care facility years ago before she retired. She said that the poor patients that didn't have a DNR (do not resuscitate) form would have some kind of attack or medical emergency and the staff would do everything possible to keep them alive. She said these poor elderly, frail, weak patients would have their chests pounded to restart their heart or different types of physical acts that someone younger could take to save their lives. She said it was insane, so violent, they'd wake up with cracked ribs, be black and blue, they had literally been beaten up. It was so disturbing that she sat myself and my frail (95 yr old) but with it Mother down and explained what it was like and we all agreed that Mom should sign a DNR. I'm so relieved knowing that Mom would never have to go through that. Julie maybe that's also something you could explain to your followers. Thank goodness you've taken on this role that no one else ever has the nerve to do ☮💜🕉
I was with my mother when her oncologist came to tell her that there was nothing left that could be done and that she was terminal. He talked in such clinical terms that she just was not understanding what he was telling her, so she finally turned to me and said, "what is he saying to me?" But because I could see his face and read his body language I could see past the jargon to understand that he was telling her that her cancer was terminal and that she was dying. So I turned to her and explained it all while the doctor tried to hold on to his game face and not weep in her presence.
I believe this! When my Grandma was dying, the hospital kept trying to push treatments on her, all different kinds. She was suffering so much. My husband and I demanded a meeting with the head of the department and made her sit down and show us exactly what was going on. It was written all over her chart that she was terminal and family needed to make decisions about hospice. Yet no one said a word to us until we pushed for it. I’m not saying every hospital does this but it sure does happen and it’s so sad.
I am an RN and it’s hard to hear my MIL (stage IV colon cancer) go to her oncologist and keep hearing him suggest new treatments. They aren’t helping the inevitable. I try to talk about the disease process; but I feel like the negative DIL and feel angry more isn’t coming from her MD. Thanks for the work that you do
It sounds like your husband needs to have a private talk with the oncologist regarding hospice and how that could help for your MIL. The doctor needs to relinquish her care over to hospice. Your husband and you as near relatives or whoever has power of medical attorney, could expedite this for her.
I’m a medical social worker and I see this often… cancer with Mets and the patient has no idea it’s terminal or the poor prognosis. Strange how doctors avoid these necessary conversations
My dad had pancreatic cancer. "They" put him through EVERYTHING!!!! He was FINALLY told treatment wasn't going to fix him. He was at end stage...we buried him 2 weeks later. Treatment =$$$$$
Dear Julie, I'm an End Of Life Doula, and volunteering in hospice, I've seen this state of denial or missing information too. One of my favorite patients told me, "I hate to disappoint you, but I'm not dying and don't need hospice." This, as his body was skeletal, and riddled with tumors. His family didn't understand that he was dying, even though he was in hospice. This disconnect is heartbreaking, and your truth with compassion at least allows for establishing a plan for what a good death can be, for patient and family, bless your ❤ heart.
I experienced the same situation with my father in law. I will never forget the confusion he was experiencing when strange people were showing up and him looking around asking was he dying. I didn't have the heart to say say. I had to find other gentle ways to hopefully get him to read between the lines. He was an old school gentleman. I thanked him for all the things he had done helping out in my marriage to his daughter and I thanked him for letting me be a part of his family. After saying this to him, I felt he knew what was going on. It is very difficult to deal with this particular issue. I had to deal with this with my own father who passed away in 2013. Just please remember everyone, be strong for you loved one. This is about their journey they are preparing for. Look back and thank God for the time you have had together.
From nada: Sounds like personal physicians don't have the balls to be honest and are passing the buck. Keep truckin' wonderful lady. Your empathy, your compassion and your honesty helps to restore my faith in America. May your life be blessed.
Awe. Spot on! I was thinking the same thing. I watch because she also restores my faith in HUMANITY. It's truly universal. If we all quit listening to the idiot box and put our attention on one another...what a better more hopeful world this would be.
Indeed true. We were fortunate enough to have an excellent doctor who knew that hospice care was needed and explained that it wasn't something for which he was trained. He then compassionately wrote the referral to hospice and said a lovely good bye to my mother in law. It reassured us about the path forward and her death was very peaceful when it came.
Julie, can it be put in a will how you want your end of life experience to be? Letting the family know you don't want food or water at the end etc? Or, is a will too late?
@@lindaforshaw2091 A will isn't read until after death. You are looking for a living will, also known as advanced directive. The Mayo Clinic has an article with good information about it.
@@lindaforshaw2091 In Australia we have what's known as an Advance Care Directive where you state your wishes separate to your will. It is also wise to legally appoint an Enduring Guardian who will make decisions on your behalf about your health care if you are no longer able to. This is entirely separate to a Power of Attorney who makes financial decisions.
You channel has helped me immensely. My 91 year old dad was rotating in and out of the hospital. The latest stay was due to multi system failure because he refused meds for 3 days when his dementia turned to delirium. I asked for Hospice services upon discharge. My mother was “NO”!!! All she thought was that they would take away all his meds and “put him to sleep”. I explained that they would not make him die. They would help him through the dying process and I didn’t want him to die in the hospital loop. I had to convinced her not to make him eat. He died peacefully within the month (2 weeks ago) and now my mother is with Hospice. Dad’s process allowed her to accept the care for herself. My goodness it’s a tough season😢
Im so sorry, Julie. I know - when families are in full on denial and/or they claim to have not been told their loved one is near death. Its not only hard on them but you as well. I hope your videos reach those who need to hear this - it is invaluable information.
Sometimes the patient & family simply cannot bear to hear what's going on. This actually happened with my good friend who is a nurse just like me. In fact, we teach nursing. Her husband suffered thru multiple hospitalizations & treatments for leukemia for approximately 8 years before he died. When he died, she was shocked and never saw it coming... she's a nurse!!! It could've been the first time you're patient/family actually heard this news. When i worked hospice, I used to call this phenomena an open window opportunity... finally a moment when their defenses were down just enough for me to be able to help educate them about their end of life process.
YES! YES YES YES!!! My mother and I figured out she was terminal via small little remarks by the nurses as we were shuffled from one specialist to the other. NO ONE sat us down and told us that she wasn't going to get better and she was terminal. NOT ONE SINGLE F-ING PERSON!!! The system has failed us time and time again, since those days. Right now, it's hospice that is failing us. Even good hospices can be hobbled by a broken system. :(
Our Mom had been sent to hospital "dehydrated." Her wonderful doctor pulled us into the hall after a week, and told us our Mom was dying. I said, then "bring her home." Her doctor hugged me, we brought her home, and she lasted two weeks. I totally agree that the medical system needs an overhaul. I feel we were so lucky to have the care we did. (And, I did hear the story of my MIL having to call a nurse friend to find out her cancer was spread, and terminal.) It's all nuts. I wish you and your family peace.
No explanation for our dad (also omitted that had sepsis). Dx with pancreatic cancer, sent home with NO instructions. Lovely hospice nurse came and he had hours left. Still resentful
Because some in our field don’t know how to have difficult conversations. In my experience some providers see hospice as “giving up”…they don’t get the bigger picture. This is where faith comes into play for me, I hold the belief there is more than this “life”…but it doesn’t really matter if you share that belief or not. It is about the patient. It is about allowing them the gift of saying what is left to be said with their loved ones…it is about having a good death. Maybe as a nurse I am biased? I think most of us understand this…and there are some amazing providers who do as well. Sometimes the kindest thing you can do is to just be honest. Bless you.
You’re one hundred percent correct, I personally question my own faith. But that does not make a difference. In that moment it’s about humanity. Maybe that is faith, maybe it’s not, but I will back humanity every single time. On that my friend we agree. 💯🫶☮️ *I’m not a nurse, but three of my aunts- RNs. One of whom questions herself, two whose faith I’ve always admired. All three having purposefully placed themselves for the same reason- to help others so they can be better than they deserved at some point. Humanity at it’s finest They asked me to throw in their full support. Because even I know the rules, I called read your answer aloud and got approval to answer first. 🔑💯😂❤️
I SOOOO wish I could find the hospice org that helped us with our Mom. They were so incredible, and down to earth! She actually made me laugh when my Mom lingered. Was waiting..... A family member came to visit, and the nurse said, "Well, THAT wasn't what she was waiting for................ Turns out it was something she had been stressing about. When I cleared those things up, she died that night. I am SO glad that I was there, but really wish that I had known what the heck I was doing! THANK YOU for your sweet stories. Wish I could actually go back and relive this experience with my Mom and Dad. You all are STINKIN amazing~
What a true blessing your are to lay out the facts on hospice care. You are level headed, and have a wonderful way of explaining the end of life journey. God bless you and this calling you have to inform us.
This makes me so sad. When my Mom was diagnosed with metastatic Stage 4 Pancreatic Cancer, she was given the option of chemotherapy. Being a nurse I knew how futile and physically taxing this would be with no real benefit but more suffering. I lovingly spoke to her about it and told her I loved her and would support her no matter the decision. She wanted to live so badly she opted for it and it was horrendous. It prolonged her life for ten months with even more suffering before succumbing to the inevitable.
The same thing happened with my mother. Hospice was never mentioned, but we wouldn’t have known what that meant anyway. At the hospital the doctor asked mama if she wanted to go home. Of course she wanted to go home. Three very nice nurses came and talked to us, told us we needed to get a hospital bed…blah blah blah. We thought they were from home health care and would help us bathe mama etc…..three days later, she died. My brother was her care giver….he thought she died because he did something wrong (Re her medicines). Due to all your wonderful videos, I only now realize the nurses were hospice and her doctor knew she was near death when she went home.
Julie, I am so sorry this is happening for you. I hope you feel the love & gratitude your community - including us - is sending your way for all you do.
Dearest Julie. I feel your pain and understand your frustration. I have worked ICU and as an RN for almost 30 years. I have seen Doctors sugar coat and mislead and lie to patients and their families for years. When asked what is the possibility of a patient surviving a surgery, their response makes the family and or patient think there is a better likelihood for survivability than is realistic. Or of that percentage that may survive, how many will return to a previous level of functioning???? Can anyone reading this think of a seriously I'll person that you know, give consent for them to have surgery only to come out of the surgery twice as debilitated? How would you manage to care for that patient? Is the little bit extra time worth the pain and costing time, tears and dollars? To what end do we put people through horrible situations? I have seen families keep a family member alive just to continue getting their monthly social security check. In states where the debt ( hospital and doctor bills) dies with the patient the family is not focused on the ill family member but financial gain. It is impossible to manage excruciating pain without the medications that would provide pain relief and be able keep a person alive at home or in the hospital without them being intubated and on a breathing machine. Please as you plan for your life, plan also for your death. NO ONE SHOULD DIE IN PAIN!!!! NO ONE SHOULD DIE ALONE OR AFRAID!!!!! Make a living will or also called advance directives or a DNR (Do Not Resuscitate). It lets health care providers know that in the event of an irreversible situation that causes death or your heart stops that you do not want CPR preformed. You can check boxes of what you do want. I want morphine and Ativan. I want to die peacefully, pain free with my loved ones at my side. Death is just the vehicle to get us from this plane of existence to the next. Earth was never meant to be our forever home. I have seen dozens and dozens of people die. Because of giving the proper medications in the necessary doses, I have not seen a person on hospice die in pain. Without adequate medication I have seen their torment. Julie, thank you again for all you do. I am so very proud of you and thankful for what God or your Higher power has done for you and the blessing you are to others. Be blessed.
Thank you Candy. You've reminded me I really need to get the paperwork done for my healthcare and death. I have zero family so it's extra important as there is nobody to advise doctors and undertakers!
Acceptance…that they did not know… unconditional love & you need not to be the answer to all life’s problems. Things happen for a reason… ( sometimes none of our business ) you provide a wonderful service to humanity. To thine own self be true. Do not allow anyone or anything free rent in your head. You are ❤in action.
I love that you are so passionate about what you do and truly care about your patients and their families. God bless you for all you're doing to ease their pain and suffering and for educating us on what to expect. ❤️
I hear you and am beyond enraged when I remember how the drs hoodwinked us into agreeing to 'feed' my mother-in-law when she was clearly actively dying. She lingered for another fortnight in agony. You are providing much needed information, both retrospectively and decision making going forward. Love and gratitude from 🇦🇺.
You have me crying, too. It's so incredibly unfair to both patient and the family to not be honest with them. Hospice is specifically for patients who are dying. The flaw I find in some medical professionals is that they assume people understand and know things that they don't. Things are not explained well enough or honestly enough. Of course, some people don't want to know the truth, but those who do should be given the truth. My friend's mother developed pancreatic cancer last year. She did radiation, but at her age apparently chemo is not an option. So things are going along fine and at one appointment the doctor said everything was good. Then, the next month the doctor said that radiation wasn't going to help her anymore and that she was terminal. Both the patient and my friend were horribly shocked because everything they had been told up to that point had been positive. When she questioned the radiologist about it later, my friend was told that elderly pancreatic cancer patients basically have 18 months to live, so the doctors new from the beginning that the woman had 18 months to live, but that information was never shared in any way. It wasn't even hinted at, at least based on what my friend said. The radiation shrank the tumor initially, and the radiologist was very happy with the results. To be fair, my friend said she wouldn't have wanted to know initially about the 18-month life expectancy and she wouldn't have wanted her mother to know. It just seems to me that the truth could have been hinted at or suggested in some way in order to prepare them for this inevitable moment. Personally, I would have wanted to know the projected life expectancy because it would have affected how I lived my life in relation to my mother. To me it's inexcusable for doctors to not prepare the patients and their family to the best of their ability.
A doctor told me 2 years before my husband passed that the hepatic encephalopathy would take his life and that he was on a downhill journey. My husband knew that and lived the best he could with several rallies thru those 2 years. He was on hospice twice, and just the term "hospice" told me we were getting near. That's what hospice is for. Palliative care is different, and that's what my husband went to for a couple months in between hospice care because he had decided he was going to fight the disease. It didn't work for him, but he tried. I am amazed that people don't know what hospice means!
I am so thankful that because of You Julie I was prepared for my Mama’s end of life properly and it was an amazing and beautiful experience. I was certainly sad and crying but also I celebrated when she died and told her” You did it Mama🎉 You made it through and now you’re with Daddy ❤! Congratulations I’m so proud of you and happy for you!!!” I truly meant it and now as I grieve her loss I have to remind myself of this so it helps me heal. I miss her so much and she just died on 1/25/2023 Thank you dear Julie 🥹
I’m also a hospice nurse and this happens all the time! Whoever signed her on service did not get informed consents if she doesn’t understand hospice is end of life care.
I heard you loud and clear! My heart is breaking with you! This is a disservice to the patient BUT what I will say with my own experience, my Dad was not ready to go on hospice when his PCP recommended he does. Dad felt he was going to get through this “hiccup” and pull through even though he was told his body is failing. He went on palliative care for a little while, thinking he would get better but found out the services he needed where not available for him unless he went under hospice. (This was in TN, which doesn’t take care of their seniors very well in my opinion!) I was traveling back and forth from Pa. (I was his POA) My Neice & her 3 kids took care of my Dad so very well, but Dad’s health was rapidly declining. Finically he agreed to go on hospice and a month later he passed. I admire and love everything you are doing to try to help us loose the fear of death. You are such a blessing and shining star. Like my Dad, that family is in denial that your patient has reached the end of her life. Prays going up for her and for you! 🙏❤️
Julie!!!!! I know exactly what you are saying!!! I seen it for my own self for years I retired from Hospice facility My heart goes out to the Hospice Patients and their families when they are not understanding what the meaning of comfort measure is for their love ones at end of life!! Julie I am so proud of you doing these videos and know it is needed!!!!🙏❤️
As a nurse, I promise you I have been here many times. To prolong someone's suffering because of denial is cruel. That woman, if they don't get it together, is going to have a very touch time.
That's what happened to me and my dad. He was an Palliative care and they told us he could go on hospice to get the oxygen he needed . It would be more of a comfort thing. It didn't mean he was going to die. He said "sure". He really needed the oxygen. So it was all set up in a hurry. He had oxygen that night. I had no idea he was dying...none! They said that it was only for comfort. He would be evaluated in 6 months. He died 2 weeks later. I was in shock when the hospice nurse told me he had a day to hours left. What? No! He is the comeback kid! I was in denile. I told the nurse that. She said I wasn't in denile. It all happened so fast. I was literly stunned! I couldn't function.
Julie , My step father died in 3 months since diagnosed from cancer, age 72 and nobody really was telling to my mum that he was dying of cancer till the very end . It was happened in Poland, this things happens and causes a lot suffering indeed. My pain lead me to you & thanks to you ❤ I learned about the process of dying to heal from the trauma of been unprepared . You are real Angle 💕 Ps. I started to work in care home for elderly once a week too :)
My Mom was terminal with pulmonary fibrosis and her doctors would never acknowledge that my Mom was terminal! They’d always say “stay positive” you’re doing great! She had a horrible death in a hospital and they still didn’t know she was actively dying until her final day! As a family member we truly don’t know. In my experience Doctors need to stop trying to be “positive”not wanting to upset the patients and start getting real!
My mom died of cancer 23 years ago. Fortunately she had a very kind and compassionate doctor who was very honest with us. And when she decided on hospice, we ended up with a fabulous hospice nurse who was also very honest with us. My mom had the most peaceful death we could give her under the circumstances. I have learned a lot about death and dying since then and am now making decisions for my 94 year old dad in memory care. There comes a point where we need to recognize if we are actually prolonging death as opposed to prolonging life.
That’s beautiful! People are stronger than some know. We can handle anything but lies. When doctors lie, it’s for their own comfort, not their patients or their families. I’m glad you didn’t have to deal with this. I was in emergency medicine and on daily IVs before I was told my condition was serious. I was so groggy and tired I needed to know…my husband had to tell me that meant I might die. I’m so grateful to still be here, though I am still living day by day and enjoying my life as much as possible…but I would have liked to drop my classes and spend more time with my family, in case, when I wasn’t stable. I’m glad to have this perspective, in a sense, because it’s not just the sick who never know how much time we have left. it’s all a gift 💝! My grandma was never told she was terminal. The family came and figured it out, and told her. I’m so glad there are providers who are a helpful and vital part of the process. ❤. Your story is very reassuring! P.S. I love your conclusion…well said! I’m very close to my cats. When the vet told me to stop my cat’s fluids as his kidneys shut down, I was horrified. When she told me water was causing his heart racing, chest rattling, and pain and he would feel better, I stopped it gladly! He was slowly drowning because the water was not being absorbed so it was collecting in his body cavities. I would have known to stop it sooner but we have a veterinary shortage since Covid-19 caused many small business to close or cut staff. We stopped it as soon as there was an emergency vet to tell us what was wrong. He had a peaceful last 9 days, after that. We need this education! Thank you nurse Julie, and all the good palliative care providers!
I hear you, both literally and figuratively. This happened to my dad. Not one person, doctor or nurse, said the words ‘your father is dying’. I will never forget his screams when they put in a PIC line. If I had only known I could have spared his so much pain! He died two days later.
Misinformation and denial are powerful coping mechanisms. My relative was actively dying. They did pain management for comfort. They told his wife ( 1973) "say your goodbyes we are planing on drugging him to the max for his comfort." She believed they were giving him antibiotics or something equally ridiculous. My dad was 84 when my mom was dying with cancer. Much later he told me he was not ready or did not understand she was actively dying.
Your compassion and empathy for your patients & family comes thru in every video that you do!! Lost my Mom many years ago. Got the call at work she had another massive stroke. Me in California, home Wisconsin. Flew red eye, got to hospital, She was hooked up to life support. Mom didn't want that! We got to sisters,Hospice came..wonderful people. Mom passed the next morning peacefully!! I wanted to stay, but sister & brother told me to leave. ...red eye again as my daughter was graduating that day!!
When my dad was nearing the end of his life, it seems the doctors wanted to squeeze as much money out of his insurance as they could. The had him coming in every two weeks, always some kind of test, blood draws every single time. They would always say that nothing had changed, still not sure, see you in 2 weeks. For 6 months this went on until dad finally said that's enough and quit going. He did get in to see a top doctor in that field, that doc said to him "There is nothing more that can be done. You know you are dying, don't you?" That's the first time anyone said those words. Less than 3 months later he passed. Our medical field needs fixed. I think his doctor should be charged with insurance fraud. Dad didn't need all those tests every 2 weeks. Thank you Julie for what you are doing, as a hospice nurse and for these videos. You are the best!!
I'd like to eradicate the whole fraud that is medical insurance. How about those funds go directly to patient care rather than the salaries of nobodies sitting behind a desk doing nothing productive and then denying payment for medical treatment.
I went through this with my grandma. They weren’t telling her. It was so painful for her. The family figured it out when we visited, asked pointed questions and talked to her. She got to die at home and if she hadn’t known she wasn’t being treated she would have stayed in a facility. I still feel bad for what she went through, not having long to come to terms with her death. I feel so bad for people who don’t have someone like Julie! When the vet wouldn’t tell me my cat was dying, when it was obvious, I got him a new vet. I wish he hadn’t had the stress of a new place and new person, for his last visits. But a doctor or nurse is not truly caring for you if they’re putting you through unnecessary pain! 💔
Wow , I feel your anger and frustration, it seems unfortunate that the so called experts are letting down the patients, one does hope it’s not down to money , are people not aware you can’t take it with you, The Egyptians tried but got robbed.
That sounds like they were in denial. My mom didn't even want paliative care nevertheless hospice. She just wasn't ready to die. She was a nurse and knew how bad it all was, but up until about 3 weeks prior to her death when she was on Covid unit and she said she wanted to go home even if it meant she'll go home to die. She didn't make it, but I'm forever grateful for those people in the paliative unit where she has passed away. They were wonderful. She passed away in the hospital where she worked for her whole life and did so much for that hospital they had a memorial meeting there for her on the day of her funeral.
There is also willful resistance on the part of the patient. My mother, 82 years old, was diagnosed with lung cancer. Honestly, she smoked 2-3 packs/day and made it to that age, causing us (her kids) to be surprised she lasted that long. She was also an alcoholic. Anyway, she was obviously failing. My older sister, who lived closest, decided to check out the hospice option. When Mom heard about that, she threw a titanic tantrum. She, despite all our arguments, equated that with being put into a nursing home, something she adamantly opposed. Older Sister then requested an at-home evaluation for hospice. Mom was still opposed. She figured at-home would ultimately become facility admission. We then rephrased it: home care. Mom wouldn't have to go to the doctor anymore, one would come to her. Aides would be assigned to check on her and be available 24 hours for issues. That mollified her. We knew it was hospice, but Mom could believe it was something else. The hospice evaluator decided to reduce the medication she was on. It really did no good; it was best to look at palliative care. Mom wasn't happy about that. She wasn't happy that she was no longer allowed to go the doctor. She did not and WOULD NOT accept that her life was coming to an end. She wanted to keep taking medication - some of which had pretty bad side effects - and continue the doctor visits. She thought she was going to get well. We had to advise the hospice people to take off their badges before coming into her apartment. Those few months were awful for everyone. Instead of having time to prepare for leaving her family, and for us to be able to support her through this journey and accept that she'd soon be gone, we all had to pretend to her that it wasn't happening so she wouldn't be agitated and combative. It wasn't until the last week or so, when Mom began to tell us other (deceased) people were in the room, that she began to be calm. Finally, she told my older sister "I think I'm dying." Then, she became mostly silent and spoke very little until she was gone. I'm in my 60s and have been following several hospice channels (Nurse Julie being my top pick) since then. While I'm in good health, I know that most of my life is behind me. I want to begin feeling more comfortable at the prospect of aging and eventual death. Nurse Julie feels like a good mentor toward that end.
The same thing happened when my 94 yr old mother, with congestive heart disease, was moved into a short term care center. Everyone (family) asked about how long she would be there and when she would be well enough to go home. I knew it was probably hours, maybe a few days, before she passed. But not a single nurse, aid, or Dr. suggested we discuss her pending death. It was like being in the twilight zone. We spent the better part of three days with her, one of which was wonderful, before she passed. I was flabbergasted that everyone acted like it was a situation where she was going home shortly. Nonetheless, we got through it but I understand your feelings about it and thank you.
Julie crying again means you care. It would be so much easier to become stoic to protect the heart from the pain of so many people passing. But you give it your all & that’s what makes you so good & a true angel of mercy helping people through the last phase of life. Bless your heart for caring Julie. You probably have no idea what a spread of difference you’re making from the patient to the families & friends to us in social media & out even further. You truly have a gift you generously share. ❤
They didn't want to hear it, denial is very strong. You explained this poor woman's situation so eloquently. Thank you for these videos and for being real 💜
I hear you , this is crazy. The patient has got to know …then again she wouldn’t be a full code. Everyone deserves to live their last days in peace and acceptance .
I have been a hospice /palliative care RN for 30 yrs . What a travesty when this happens .So sorry that you had to go thru this but glad you were there to get the family thinking .
Because people enable that belief because they are not doing their job (in helping and listening to what the family is saying and talking about). This is an example of how when someone doesn't do the job in the chain, it affects the people/medical personnel (and patient and family), down the line and makes everything more difficult. I think you are showing just one example of this is the medical field. It can happen in any working/care taking situation. The heroes are the people who stop & correct the path as best they can, at the time. You are one of those HEROES.
I visit many stage IV cancer patients on TH-cam, generally in their late thirties who have continuously been led along by their doctors. I truly believe that doctors are afraid to be honest with their patients. They don’t seem to want to broach the subject and instead keep them coming back to the hospital for more surgery and treatments that may or may not prolong their lives. I’m not surprised that families haven’t had the talk with their physician. I watched one wonderful mother deteriorate into a bedridden skeleton without hospice ever being mentioned. And when she finally had to be carried into a wheelchair, her doctor required her to make an arduous visit to see him for her final visit. I found that heartbreaking and unnecessary. Where is the compassion? Where is the honesty?
Sadly I'm not surprised. As a nurse I've had to confront many doctors about them not sharing the prognosis with the patients. I've had doctors tell me it's because "maybe there's more we can do" or "they're not ready to hear that." Even if there are further options the patient has the right to know where their current health is at. I finally got fed up with the extend life at all costs despite suffering attitude and changed to hospice nursing.
This kind of happened to us we had no idea my dad was going to die he had been home complaining his hip hurt we finally got him to go check out his hip he was in the hospital 2 days in hospice 2 days and he died that morning it was so fast my dad was 90 we had no idea he was going to go that fast he was in great health his entire life and seemed fine at home except for the pain in his hip and problems walking. Life is short eternity is forever. I love ur channel I found it the day after my dad died I wish I would have found it sooner it would have helped.
That's simply horrible but I find it hard to believe the provider didn't tell the patient or family that she was terminal. Some people live in denial. My Mom just started hospice, she is 89 , 90 in July God willing and while my mind is crippled with grief just missing how she was just a short while ago and knowing her time here is short, I can't help myself thinking she could get better just to cope. I miss our fun times together so much some days I just can't stand it but your channel helps so much making this normal. Hospice has been such a comfort too. Thank you Julie!
Oh my gosh that is so sad. So when you sat them down to clarify things, they denied that she was dying? I hope we get a part 2 of this if you go back ♥️
I feel sorry for her and so sorry you have to go through this disservice to her. The doctor needs to speak with this family. If she codes and is brought back, how will she be??? Still dying and with broken ribs.
It could also be a case of denial. My father was on dialysis, his arteries were clogged, his right foot was going black and would need to be amputated but he was not fit for surgery. He was in immense vascular pain and on fentanyl and other pain meds. His vascular and nephrology surgeons said that he could continue his dialysis and could live for another few months but his pain level would increase or he could stop dialysis and would probably live for another 2 weeks. I was my fathers only carer and knew his wishes so I called each of my siblings and explained that I was going to ask the doctors to stop dialysis. One of my siblings was shocked with me and said "oh we can't do that, give him more time to get used the idea". I had to explain everything to him and eventually ask him if we allowed dad to continue dialysis and cause his pain level to rise in severity, were we being selfish and really only giving ourselves more time. He eventually agreed with my choice and my dad passed away peacefully less than a week later.
When my Aunt's cancer returned with a vengeance, she told NO ONE! Her first go around with cancer treatment had slowed progression, but SHE KNEW IT WOULD RETURN. She opted no treatment and only Hospice care for her last 10 days, BECAUSE SHE KNEW everyone would tell her to fight. She chose peace, quiet and a calm uninterferred Death with dignity.
Shouldn't their doctor tell them before they enter hospice? I'm so sorry. It shouldn't be up to you. It's so hard to take on. Bless you. It must be very frustrating. Just know, you are doing a service to so many. Not just those at end of life, your vids help people more than you could possibly imagine. :)
My dad was in ICU for weeks where they did so many invasive, painful things to heal him. But in the end they say they’re done and he needs to go to Rehab, 45 minutes away. He couldn’t talk, walk or swallow. I was the one that had to say “No”, I could sense he was dying. So sure enough, he died three days later in hospice. The system is broken and cruel.
Thank you for all you do! I had similar situation with my mom and dementia diagnosis. No one would come out and say it, even when asked point blank. They just wanted her to keep coming back for evaluations. They made her feel horrible so I stopped taking her. Years later she is now on hospice (I had to fight for it) because she would not have wanted all that craziness.
😢😢😢😢my heart hurts..just immense prayers over you, this family, this darling precious lady… I’m so glad you are there for them in this extremely difficult time.. whether they want to hear you or not.. your wise, gentle counsel and energies are still right there with them…
Sadly, as long as the insurance is good and the bills are being paid, the hospital will keep providing full measures for the patient. Cancer patients bring big money to health care facilities and Doctors. This happened with my Dad. They see Dollars not end of life. It’s horrible. Bless YOU Julie for a beautiful kind heart. Thank you for every aspect of your patient care. 🙏✝️
Which is why we need to eradicate health insurance and send those funds directly to patient care instead of paying the salaries of desk jockeys who do nothing productive.
One super big hug for YOU Julie 🤗. Some people ( whole families !!! )….. just do NOT want to hear what you say…. It is very hard and unbelievable, but you know Julie… YOU DO IT ALL RIGHT AND WITH SO MUCH LOVE AND PATIENCE ❤. Know that “ you “ did all you can and try to mentally distance yourself. If people don’t want to hear you there’s nothing you can do. Stay YOU 👍🏽❤️
Julie, as a social worker I had an occasion where I had to "translate" a doctor's kind words of encouragement to reality for a patient. Her only concern was for the doctor, saying that it must have been hard for him to try and tell her that she was going to die. It brings tears to my eyes over thirty years later. Another time a patient's husband had stopped her pain medication because of a misunderstanding due to a faulty translation. I was able to explain the actual use of the medication and as a result the lady had pain relief for the last three days of her life. Not acceptable, but at least she had that. Good communication is a crap shoot at best, and in our professions it's perhaps one of the most important skills we have. Given, some patients and/or families simply don't want to hear what they don't want to hear. But, despite the mix up ( I'd usually use more earthy language, but we're PG here), you did your job. There's no getting back the time that this family didn't have to prepare themselves for the inevitable, but you did your job. You gave them the gift of being able to grieve together, to cry, to remember. You gave them the time that was left. They will always remember you for that - of that, I'm certain. You did your job Julie. Thanks.
Oh Julie, I sit here and listen to your story and am so sad. I don't know what to say. Oh how I wish they could understand.... Thank you so much for all you do.
This video should be included in *all* palliative/hospice/end-of-life care training, and required viewing by all medical personnel involved! Bless you for all you do, you're truly an angel on Earth! Please take as special care of yourself that you give to others! 🤗🕊️🙏❤️🕯️
This is how things happened with my dad 11 years ago. In hospital no one talked us through what was happening. Now that I’ve lived through it I can clearly see it was end of life. My dad was actively dying and no one talked us through it until he was beginning his last breaths. Thank you so much for sharing this knowledge so freely and for caring so greatly.
that dying with a beautiful thing I I gave him permission to leave the hardest thing for me to do but I didn't want him to suffer anymore and when he passed shortly after I gave him permission permission he had the most beautiful piece on his face it was a difficult time for me and I still I'm grieving so much for him his time to go keep on doing these videos to educate us thank you
Exact same scenario for me.
No one made it clear that my dad was dying soon or either I wouldn’t listen. All I know is that I knew it instinctively, but didn’t want to believe it.
My wife was a hospice nurse and suffered a lot of this pain of watching patients die in horrible ways because nobody wanted to face the truth. My wife unfortunately ended up with complications from surgery after a fall which cracked her jaw and she was in the ICU, sedated, on a vent for over 4 weeks. Her and I had talked about these things but in the moment all I could think about was getting her off the vent so we could talk again. For as prepared as I was for this moment having lived with somebody who talked about end of life care, I was absolutely not prepared for facing reality. It may be they only selectively heard what they wanted to hear and thought the absolute best case scenario's. Ultimately my wife's condition got worse and I had to sit back and ask what would she do? And we decided to pull life support surrounded by family. Your story brought tears to my eye because it reminded me of listening to my wife and her stories of frustration and sadness. She also would cry at times. What hospice nurses do is amazing for people and families. Please keep your spirits up and take care of you!
So sorry to hear you lost your wife.
Sending hugs your way.
My sincere condolences.
😢
I am so sorry for your loss. Thank you for sharing your story with all of us.
P
My father died a couple weeks ago while on hospice. Being his sole caregiver, we had plenty of talks while he was still "unbefuddled". He was full code but we knew his frail body wouldn't do well if that happened. He had Pancreatic cancer (st 4), emphysema, copd, an AAA, complicated diabetes, prostate issues, recurring UTIs, terrible hearing... the UTIs gave him dementia-like symptoms so he'd try getting dressed at 3am to "go to work"...he was very unsteady and fell several times. Broke his hip, broke his ribs, and gave himself a hell of a goose egg on his head... and even then he wanted to continue to fight every day. He didn't want to "give up" because his six month prognosis lasted 5 and a half more years. When mom died six months ago, I think the fight went out of him but he wanted to "make her proud". He didn't begin actively dying until about 3 days before he went, and fought right up until the end.
Sometimes people want to fight regardless. Sometimes the people around them hate to see them suffer so they allow themselves the lie that he will get better. As a hospice nurse you can understand and feel compassion for the patient, and get frustrated that there is an "easier" way... sometimes the patient himself is the culprit. And sometimes us caregivers have no choices but to allow them the "final choice" on how they would like to go. And thats ok too.
Please know that your videos changed my life.
I was afraid and didn't know what to do, how to be a caregiver, what to expect... I was in a constant panic. Then I found you. You answered all my questions in small digestible bits and once I understood things, got a better perspective, I was very calm and happy to do this journey with my dad.
I also gave your video links to my hospice doctor and he was blown away, and is making them mandatory watching for his nurses and any caregivers who need them. Thank you for what you do. God bless.
Your comment made me cry. I’m so sorry for your losses. 💕🌹
You wouldn't believe how many doctors avoid these discussions, can't say the words. Bless you for what you do!
My Dad had colon/rectal cancer, they'd talked him into a colostomy. He then went to his eye doctor to schedule cataract surgery (VA). They informed him that by the time they could get him in, he'd be gone. He got home and asked my sister and I if we knew this...No we didn't. He went to a private eye surgeon and had one side done. Hospice got involved and he got upset because he wasn't formally told that he was at end of life except for the VA eye doctor. It wasn't until later the hospice nurse told me that he was at end of life and didn't have much longer, and asked me if I had been told that. She said it was in his file... but we weren't told. She was a Godsend and helped us through the toughest parts. Dad decided to go into a hospice center and they were wonderful.
You are so extremely valuable with your videos Ms. Julie. It is so important.
My Sister was a volunteer at a hospice care facility years ago before she retired. She said that the poor patients that didn't have a DNR (do not resuscitate) form would have some kind of attack or medical emergency and the staff would do everything possible to keep them alive. She said these poor elderly, frail, weak patients would have their chests pounded to restart their heart or different types of physical acts that someone younger could take to save their lives. She said it was insane, so violent, they'd wake up with cracked ribs, be black and blue, they had literally been beaten up. It was so disturbing that she sat myself and my frail (95 yr old) but with it Mother down and explained what it was like and we all agreed that Mom should sign a DNR. I'm so relieved knowing that Mom would never have to go through that. Julie maybe that's also something you could explain to your followers. Thank goodness you've taken on this role that no one else ever has the nerve to do ☮💜🕉
Sweet Girl you are precious and your rewards are many when it’s your time. I just can’t say thank you enough 🙏♥️
I was with my mother when her oncologist came to tell her that there was nothing left that could be done and that she was terminal. He talked in such clinical terms that she just was not understanding what he was telling her, so she finally turned to me and said, "what is he saying to me?"
But because I could see his face and read his body language I could see past the jargon to understand that he was telling her that her cancer was terminal and that she was dying. So I turned to her and explained it all while the doctor tried to hold on to his game face and not weep in her presence.
You are doing Gods work here on earth. Prayers for you every day.
"god" got nowt to do with it 🖤👿
I believe this! When my Grandma was dying, the hospital kept trying to push treatments on her, all different kinds. She was suffering so much. My husband and I demanded a meeting with the head of the department and made her sit down and show us exactly what was going on. It was written all over her chart that she was terminal and family needed to make decisions about hospice. Yet no one said a word to us until we pushed for it. I’m not saying every hospital does this but it sure does happen and it’s so sad.
I am an RN and it’s hard to hear my MIL (stage IV colon cancer) go to her oncologist and keep hearing him suggest new treatments. They aren’t helping the inevitable. I try to talk about the disease process; but I feel like the negative DIL and feel angry more isn’t coming from her MD. Thanks for the work that you do
It sounds like your husband needs to have a private talk with the oncologist regarding hospice and how that could help for your MIL. The doctor needs to relinquish her care over to hospice. Your husband and you as near relatives or whoever has power of medical attorney, could expedite this for her.
That is a hard position you are in. I'm sorry.
I’m a medical social worker and I see this often… cancer with Mets and the patient has no idea it’s terminal or the poor prognosis. Strange how doctors avoid these necessary conversations
My dad had pancreatic cancer. "They" put him through EVERYTHING!!!! He was FINALLY told treatment wasn't going to fix him. He was at end stage...we buried him 2 weeks later.
Treatment =$$$$$
Dear Julie, I'm an End Of Life Doula, and volunteering in hospice, I've seen this state of denial or missing information too. One of my favorite patients told me, "I hate to disappoint you, but I'm not dying and don't need hospice." This, as his body was skeletal, and riddled with tumors. His family didn't understand that he was dying, even though he was in hospice. This disconnect is heartbreaking, and your truth with compassion at least allows for establishing a plan for what a good death can be, for patient and family, bless your ❤ heart.
The world needs more of you❤
I experienced the same situation with my father in law. I will never forget the confusion he was experiencing when strange people were showing up and him looking around asking was he dying. I didn't have the heart to say say. I had to find other gentle ways to hopefully get him to read between the lines. He was an old school gentleman. I thanked him for all the things he had done helping out in my marriage to his daughter and I thanked him for letting me be a part of his family. After saying this to him, I felt he knew what was going on. It is very difficult to deal with this particular issue.
I had to deal with this with my own father who passed away in 2013. Just please remember everyone, be strong for you loved one. This is about their journey they are preparing for. Look back and thank God for the time you have had together.
From nada: Sounds like personal physicians don't have the balls to be honest and are passing the buck. Keep truckin' wonderful lady. Your empathy, your compassion and your honesty helps to restore my faith in America. May your life be blessed.
Awe. Spot on! I was thinking the same thing. I watch because she also restores my faith in HUMANITY. It's truly universal. If we all quit listening to the idiot box and put our attention on one another...what a better more hopeful world this would be.
Indeed true. We were fortunate enough to have an excellent doctor who knew that hospice care was needed and explained that it wasn't something for which he was trained. He then compassionately wrote the referral to hospice and said a lovely good bye to my mother in law. It reassured us about the path forward and her death was very peaceful when it came.
Julie, can it be put in a will how you want your end of life experience to be? Letting the family know you don't want food or water at the end etc? Or, is a will too late?
@@lindaforshaw2091 A will isn't read until after death. You are looking for a living will, also known as advanced directive. The Mayo Clinic has an article with good information about it.
@@lindaforshaw2091 In Australia we have what's known as an Advance Care Directive where you state your wishes separate to your will. It is also wise to legally appoint an Enduring Guardian who will make decisions on your behalf about your health care if you are no longer able to. This is entirely separate to a Power of Attorney who makes financial decisions.
You channel has helped me immensely. My 91 year old dad was rotating in and out of the hospital. The latest stay was due to multi system failure because he refused meds for 3 days when his dementia turned to delirium. I asked for Hospice services upon discharge. My mother was “NO”!!! All she thought was that they would take away all his meds and “put him to sleep”. I explained that they would not make him die. They would help him through the dying process and I didn’t want him to die in the hospital loop. I had to convinced her not to make him eat. He died peacefully within the month (2 weeks ago) and now my mother is with Hospice. Dad’s process allowed her to accept the care for herself. My goodness it’s a tough season😢
Im so sorry, Julie. I know - when families are in full on denial and/or they claim to have not been told their loved one is near death. Its not only hard on them but you as well. I hope your videos reach those who need to hear this - it is invaluable information.
My patient passed Friday night. Family was exactly like you’re describing.
Thank you❤️🤗. You are very good at what you do.
Julia, allow those feelings that make you cry. It shows that you still care about people. Hard for you but such a necessary service to your patients.
Sometimes the patient & family simply cannot bear to hear what's going on. This actually happened with my good friend who is a nurse just like me. In fact, we teach nursing. Her husband suffered thru multiple hospitalizations & treatments for leukemia for approximately 8 years before he died. When he died, she was shocked and never saw it coming... she's a nurse!!!
It could've been the first time you're patient/family actually heard this news. When i worked hospice, I used to call this phenomena an open window opportunity... finally a moment when their defenses were down just enough for me to be able to help educate them about their end of life process.
YES! YES YES YES!!! My mother and I figured out she was terminal via small little remarks by the nurses as we were shuffled from one specialist to the other. NO ONE sat us down and told us that she wasn't going to get better and she was terminal. NOT ONE SINGLE F-ING PERSON!!! The system has failed us time and time again, since those days. Right now, it's hospice that is failing us. Even good hospices can be hobbled by a broken system. :(
Think it's all about how much money can they get out of you. Sad as that is.
Our Mom had been sent to hospital "dehydrated." Her wonderful doctor pulled us into the hall after a week, and told us our Mom was dying. I said, then "bring her home." Her doctor hugged me, we brought her home, and she lasted two weeks. I totally agree that the medical system needs an overhaul. I feel we were so lucky to have the care we did. (And, I did hear the story of my MIL having to call a nurse friend to find out her cancer was spread, and terminal.) It's all nuts. I wish you and your family peace.
@@Sunny-rh1yp Agree seen if with my mom.
Omg I love you so much you must have had a calling.
I’m so relieved that there are caring and compassionate nurses like you dear ❤
If only we could clone Julie.
No explanation for our dad (also omitted that had sepsis). Dx with pancreatic cancer, sent home with NO instructions. Lovely hospice nurse came and he had hours left. Still resentful
Because some in our field don’t know how to have difficult conversations. In my experience some providers see hospice as “giving up”…they don’t get the bigger picture. This is where faith comes into play for me, I hold the belief there is more than this “life”…but it doesn’t really matter if you share that belief or not. It is about the patient. It is about allowing them the gift of saying what is left to be said with their loved ones…it is about having a good death. Maybe as a nurse I am biased? I think most of us understand this…and there are some amazing providers who do as well. Sometimes the kindest thing you can do is to just be honest. Bless you.
Great post Alie.
You’re one hundred percent correct, I personally question my own faith.
But that does not make a difference. In that moment it’s about humanity.
Maybe that is faith, maybe it’s not, but I will back humanity every single time.
On that my friend we agree. 💯🫶☮️
*I’m not a nurse, but three of my aunts- RNs. One of whom questions herself, two whose faith I’ve always admired.
All three having purposefully placed themselves for the same reason- to help others so they can be better than they deserved at some point.
Humanity at it’s finest
They asked me to throw in their full support. Because even I know the rules, I called read your answer aloud and got approval to answer first. 🔑💯😂❤️
I SOOOO wish I could find the hospice org that helped us with our Mom. They were so incredible, and down to earth! She actually made me laugh when my Mom lingered. Was waiting..... A family member came to visit, and the nurse said, "Well, THAT wasn't what she was waiting for................ Turns out it was something she had been stressing about. When I cleared those things up, she died that night. I am SO glad that I was there, but really wish that I had known what the heck I was doing! THANK YOU for your sweet stories. Wish I could actually go back and relive this experience with my Mom and Dad. You all are STINKIN amazing~
What a true blessing your are to lay out the facts on hospice care. You are level headed, and have a wonderful way of explaining the end of life journey. God bless you and this calling you have to inform us.
This makes me so sad. When my Mom was diagnosed with metastatic Stage 4 Pancreatic Cancer, she was given the option of chemotherapy. Being a nurse I knew how futile and physically taxing this would be with no real benefit but more suffering. I lovingly spoke to her about it and told her I loved her and would support her no matter the decision. She wanted to live so badly she opted for it and it was horrendous. It prolonged her life for ten months with even more suffering before succumbing to the inevitable.
The same thing happened with my mother. Hospice was never mentioned, but we wouldn’t have known what that meant anyway. At the hospital the doctor asked mama if she wanted to go home. Of course she wanted to go home. Three very nice nurses came and talked to us, told us we needed to get a hospital bed…blah blah blah. We thought they were from home health care and would help us bathe mama etc…..three days later, she died. My brother was her care giver….he thought she died because he did something wrong (Re her medicines). Due to all your wonderful videos, I only now realize the nurses were hospice and her doctor knew she was near death when she went home.
You are the most compassionate nurse I can think of ! If I could , I would hug you !
Julie, I am so sorry this is happening for you. I hope you feel the love & gratitude your community - including us - is sending your way for all you do.
Dearest Julie. I feel your pain and understand your frustration. I have worked ICU and as an RN for almost 30 years. I have seen Doctors sugar coat and mislead and lie to patients and their families for years. When asked what is the possibility of a patient surviving a surgery, their response makes the family and or patient think there is a better likelihood for survivability than is realistic. Or of that percentage that may survive, how many will return to a previous level of functioning???? Can anyone reading this think of a seriously I'll person that you know, give consent for them to have surgery only to come out of the surgery twice as debilitated? How would you manage to care for that patient? Is the little bit extra time worth the pain and costing time, tears and dollars? To what end do we put people through horrible situations? I have seen families keep a family member alive just to continue getting their monthly social security check. In states where the debt ( hospital and doctor bills) dies with the patient the family is not focused on the ill family member but financial gain. It is impossible to manage excruciating pain without the medications that would provide pain relief and be able keep a person alive at home or in the hospital without them being intubated and on a breathing machine. Please as you plan for your life, plan also for your death. NO ONE SHOULD DIE IN PAIN!!!! NO ONE SHOULD DIE ALONE OR AFRAID!!!!! Make a living will or also called advance directives or a DNR (Do Not Resuscitate). It lets health care providers know that in the event of an irreversible situation that causes death or your heart stops that you do not want CPR preformed. You can check boxes of what you do want. I want morphine and Ativan. I want to die peacefully, pain free with my loved ones at my side. Death is just the vehicle to get us from this plane of existence to the next. Earth was never meant to be our forever home. I have seen dozens and dozens of people die. Because of giving the proper medications in the necessary doses, I have not seen a person on hospice die in pain. Without adequate medication I have seen their torment. Julie, thank you again for all you do. I am so very proud of you and thankful for what God or your Higher power has done for you and the blessing you are to others. Be blessed.
Thank you Candy. You've reminded me I really need to get the paperwork done for my healthcare and death. I have zero family so it's extra important as there is nobody to advise doctors and undertakers!
Acceptance…that they did not know… unconditional love & you need not to be the answer to all life’s problems. Things happen for a reason… ( sometimes none of our business ) you provide a wonderful service to humanity. To thine own self be true. Do not allow anyone or anything free rent in your head. You are ❤in action.
I love that you are so passionate about what you do and truly care about your patients and their families. God bless you for all you're doing to ease their pain and suffering and for educating us on what to expect. ❤️
I hear you and am beyond enraged when I remember how the drs hoodwinked us into agreeing to 'feed' my mother-in-law when she was clearly actively dying. She lingered for another fortnight in agony. You are providing much needed information, both retrospectively and decision making going forward. Love and gratitude from 🇦🇺.
You have me crying, too. It's so incredibly unfair to both patient and the family to not be honest with them. Hospice is specifically for patients who are dying. The flaw I find in some medical professionals is that they assume people understand and know things that they don't. Things are not explained well enough or honestly enough. Of course, some people don't want to know the truth, but those who do should be given the truth. My friend's mother developed pancreatic cancer last year. She did radiation, but at her age apparently chemo is not an option. So things are going along fine and at one appointment the doctor said everything was good. Then, the next month the doctor said that radiation wasn't going to help her anymore and that she was terminal. Both the patient and my friend were horribly shocked because everything they had been told up to that point had been positive. When she questioned the radiologist about it later, my friend was told that elderly pancreatic cancer patients basically have 18 months to live, so the doctors new from the beginning that the woman had 18 months to live, but that information was never shared in any way. It wasn't even hinted at, at least based on what my friend said. The radiation shrank the tumor initially, and the radiologist was very happy with the results. To be fair, my friend said she wouldn't have wanted to know initially about the 18-month life expectancy and she wouldn't have wanted her mother to know. It just seems to me that the truth could have been hinted at or suggested in some way in order to prepare them for this inevitable moment. Personally, I would have wanted to know the projected life expectancy because it would have affected how I lived my life in relation to my mother. To me it's inexcusable for doctors to not prepare the patients and their family to the best of their ability.
A doctor told me 2 years before my husband passed that the hepatic encephalopathy would take his life and that he was on a downhill journey. My husband knew that and lived the best he could with several rallies thru those 2 years. He was on hospice twice, and just the term "hospice" told me we were getting near. That's what hospice is for. Palliative care is different, and that's what my husband went to for a couple months in between hospice care because he had decided he was going to fight the disease. It didn't work for him, but he tried. I am amazed that people don't know what hospice means!
I am so thankful that because of You Julie I was prepared for my Mama’s end of life properly and it was an amazing and beautiful experience. I was certainly sad and crying but also I celebrated when she died and told her” You did it Mama🎉 You made it through and now you’re with Daddy ❤! Congratulations I’m so proud of you and happy for you!!!” I truly meant it and now as I grieve her loss I have to remind myself of this so it helps me heal. I miss her so much and she just died on 1/25/2023 Thank you dear Julie 🥹
Wow, this is so cool. You are strong!
I’m also a hospice nurse and this happens all the time! Whoever signed her on service did not get informed consents if she doesn’t understand hospice is end of life care.
I heard you loud and clear! My heart is breaking with you! This is a disservice to the patient BUT what I will say with my own experience, my Dad was not ready to go on hospice when his PCP recommended he does.
Dad felt he was going to get through this “hiccup” and pull through even though he was told his body is failing. He went on palliative care for a little while, thinking he would get better but found out the services he needed where not available for him unless he went under hospice. (This was in TN, which doesn’t take care of their seniors very well in my opinion!) I was traveling back and forth from Pa. (I was his POA) My Neice & her 3 kids took care of my Dad so very well, but Dad’s health was rapidly declining. Finically he agreed to go on hospice and a month later he passed.
I admire and love everything you are doing to try to help us loose the fear of death. You are such a blessing and shining star. Like my Dad, that family is in denial that your patient has reached the end of her life. Prays going up for her and for you! 🙏❤️
I wish I could give you a hug. Bless you, Julie.
Julie!!!!!
I know exactly what you are saying!!! I seen it for my own self for years
I retired from Hospice facility
My heart goes out to the Hospice Patients and their families when they are not understanding what the meaning of comfort measure is for their love ones at end of life!!
Julie I am so proud of you doing these videos and know it is needed!!!!🙏❤️
As a nurse, I promise you I have been here many times. To prolong someone's suffering because of denial is cruel. That woman, if they don't get it together, is going to have a very touch time.
That's what happened to me and my dad. He was an Palliative care and they told us he could go on hospice to get the oxygen he needed . It would be more of a comfort thing. It didn't mean he was going to die. He said "sure". He really needed the oxygen. So it was all set up in a hurry. He had oxygen that night. I had no idea he was dying...none! They said that it was only for comfort. He would be evaluated in 6 months. He died 2 weeks later. I was in shock when the hospice nurse told me he had a day to hours left. What? No! He is the comeback kid! I was in denile. I told the nurse that. She said I wasn't in denile. It all happened so fast. I was literly stunned! I couldn't function.
Julie ,
My step father died in 3 months since diagnosed from cancer, age 72 and nobody really was telling to my mum that he was dying of cancer till the very end .
It was happened in Poland, this things happens and causes a lot suffering indeed.
My pain lead me to you & thanks to you ❤ I learned about the process of dying to heal from the trauma of been unprepared .
You are real Angle 💕
Ps. I started to work in care home for elderly once a week too :)
My Mom was terminal with pulmonary fibrosis and her doctors would never acknowledge that my Mom was terminal! They’d always say “stay positive” you’re doing great! She had a horrible death in a hospital and they still didn’t know she was actively dying until her final day! As a family member we truly don’t know. In my experience Doctors need to stop trying to be “positive”not wanting to upset the patients and start getting real!
My mom died of cancer 23 years ago. Fortunately she had a very kind and compassionate doctor who was very honest with us. And when she decided on hospice, we ended up with a fabulous hospice nurse who was also very honest with us. My mom had the most peaceful death we could give her under the circumstances. I have learned a lot about death and dying since then and am now making decisions for my 94 year old dad in memory care. There comes a point where we need to recognize if we are actually prolonging death as opposed to prolonging life.
That’s beautiful! People are stronger than some know. We can handle anything but lies. When doctors lie, it’s for their own comfort, not their patients or their families. I’m glad you didn’t have to deal with this. I was in emergency medicine and on daily IVs before I was told my condition was serious. I was so groggy and tired I needed to know…my husband had to tell me that meant I might die. I’m so grateful to still be here, though I am still living day by day and enjoying my life as much as possible…but I would have liked to drop my classes and spend more time with my family, in case, when I wasn’t stable. I’m glad to have this perspective, in a sense, because it’s not just the sick who never know how much time we have left. it’s all a gift 💝! My grandma was never told she was terminal. The family came and figured it out, and told her. I’m so glad there are providers who are a helpful and vital part of the process. ❤. Your story is very reassuring!
P.S. I love your conclusion…well said! I’m very close to my cats. When the vet told me to stop my cat’s fluids as his kidneys shut down, I was horrified. When she told me water was causing his heart racing, chest rattling, and pain and he would feel better, I stopped it gladly! He was slowly drowning because the water was not being absorbed so it was collecting in his body cavities. I would have known to stop it sooner but we have a veterinary shortage since Covid-19 caused many small business to close or cut staff. We stopped it as soon as there was an emergency vet to tell us what was wrong. He had a peaceful last 9 days, after that. We need this education! Thank you nurse Julie, and all the good palliative care providers!
I hear you, both literally and figuratively. This happened to my dad. Not one person, doctor or nurse, said the words ‘your father is dying’. I will never forget his screams when they put in a PIC line. If I had only known I could have spared his so much pain! He died two days later.
I'm sorry for your loss and the memories attached to it.
Thank you Candy❤
They put the pic line in wrong..there are ways to manage discomfort with pic line insertion.
Misinformation and denial are powerful coping mechanisms. My relative was actively dying. They did pain management for comfort. They told his wife ( 1973) "say your goodbyes we are planing on drugging him to the max for his comfort." She believed they were giving him antibiotics or something equally ridiculous.
My dad was 84 when my mom was dying with cancer. Much later he told me he was not ready or did not understand she was actively dying.
Your compassion and empathy for your patients & family comes thru in every video that you do!! Lost my Mom many years ago. Got the call at work she had another massive stroke. Me in California, home Wisconsin. Flew red eye, got to hospital, She was hooked up to life support. Mom didn't want that! We got to sisters,Hospice came..wonderful people. Mom passed the next morning peacefully!!
I wanted to stay, but sister & brother told me to leave. ...red eye again as my daughter was graduating that day!!
When my dad was nearing the end of his life, it seems the doctors wanted to squeeze as much money out of his insurance as they could. The had him coming in every two weeks, always some kind of test, blood draws every single time. They would always say that nothing had changed, still not sure, see you in 2 weeks. For 6 months this went on until dad finally said that's enough and quit going. He did get in to see a top doctor in that field, that doc said to him "There is nothing more that can be done. You know you are dying, don't you?" That's the first time anyone said those words. Less than 3 months later he passed. Our medical field needs fixed. I think his doctor should be charged with insurance fraud. Dad didn't need all those tests every 2 weeks.
Thank you Julie for what you are doing, as a hospice nurse and for these videos. You are the best!!
I'd like to eradicate the whole fraud that is medical insurance. How about those funds go directly to patient care rather than the salaries of nobodies sitting behind a desk doing nothing productive and then denying payment for medical treatment.
I went through this with my grandma. They weren’t telling her. It was so painful for her. The family figured it out when we visited, asked pointed questions and talked to her. She got to die at home and if she hadn’t known she wasn’t being treated she would have stayed in a facility. I still feel bad for what she went through, not having long to come to terms with her death. I feel so bad for people who don’t have someone like Julie! When the vet wouldn’t tell me my cat was dying, when it was obvious, I got him a new vet. I wish he hadn’t had the stress of a new place and new person, for his last visits. But a doctor or nurse is not truly caring for you if they’re putting you through unnecessary pain! 💔
Wow , I feel your anger and frustration, it seems unfortunate that the so called experts are letting down the patients, one does hope it’s not down to money , are people not aware you can’t take it with you, The Egyptians tried but got robbed.
Right on ! People don't know. I was one.
Thank you for being so compassionate
Thank you. To me you're an Earth Angel, one of the
The most challenging experiences
That sounds like they were in denial. My mom didn't even want paliative care nevertheless hospice. She just wasn't ready to die. She was a nurse and knew how bad it all was, but up until about 3 weeks prior to her death when she was on Covid unit and she said she wanted to go home even if it meant she'll go home to die. She didn't make it, but I'm forever grateful for those people in the paliative unit where she has passed away. They were wonderful. She passed away in the hospital where she worked for her whole life and did so much for that hospital they had a memorial meeting there for her on the day of her funeral.
I can only pray for someone as compassionate and caring as you when I'm ready for my journey.❣️🙏
I hear ya girl 🥰🥰🥰
Thank a million times for sharing sweet Angel ❤❤❤
There is also willful resistance on the part of the patient.
My mother, 82 years old, was diagnosed with lung cancer. Honestly, she smoked 2-3 packs/day and made it to that age, causing us (her kids) to be surprised she lasted that long. She was also an alcoholic. Anyway, she was obviously failing. My older sister, who lived closest, decided to check out the hospice option. When Mom heard about that, she threw a titanic tantrum. She, despite all our arguments, equated that with being put into a nursing home, something she adamantly opposed. Older Sister then requested an at-home evaluation for hospice. Mom was still opposed. She figured at-home would ultimately become facility admission.
We then rephrased it: home care. Mom wouldn't have to go to the doctor anymore, one would come to her. Aides would be assigned to check on her and be available 24 hours for issues. That mollified her. We knew it was hospice, but Mom could believe it was something else. The hospice evaluator decided to reduce the medication she was on. It really did no good; it was best to look at palliative care. Mom wasn't happy about that. She wasn't happy that she was no longer allowed to go the doctor. She did not and WOULD NOT accept that her life was coming to an end. She wanted to keep taking medication - some of which had pretty bad side effects - and continue the doctor visits. She thought she was going to get well. We had to advise the hospice people to take off their badges before coming into her apartment.
Those few months were awful for everyone. Instead of having time to prepare for leaving her family, and for us to be able to support her through this journey and accept that she'd soon be gone, we all had to pretend to her that it wasn't happening so she wouldn't be agitated and combative. It wasn't until the last week or so, when Mom began to tell us other (deceased) people were in the room, that she began to be calm. Finally, she told my older sister "I think I'm dying." Then, she became mostly silent and spoke very little until she was gone.
I'm in my 60s and have been following several hospice channels (Nurse Julie being my top pick) since then. While I'm in good health, I know that most of my life is behind me. I want to begin feeling more comfortable at the prospect of aging and eventual death. Nurse Julie feels like a good mentor toward that end.
The same thing happened when my 94 yr old mother, with congestive heart disease, was moved into a short term care center. Everyone (family) asked about how long she would be there and when she would be well enough to go home. I knew it was probably hours, maybe a few days, before she passed. But not a single nurse, aid, or Dr. suggested we discuss her pending death. It was like being in the twilight zone. We spent the better part of three days with her, one of which was wonderful, before she passed. I was flabbergasted that everyone acted like it was a situation where she was going home shortly. Nonetheless, we got through it but I understand your feelings about it and thank you.
The twilight zone is exactly how it feels watching a loved one dying.
Julie crying again means you care. It would be so much easier to become stoic to protect the heart from the pain of so many people passing. But you give it your all & that’s what makes you so good & a true angel of mercy helping people through the last phase of life. Bless your heart for caring Julie. You probably have no idea what a spread of difference you’re making from the patient to the families & friends to us in social media & out even further. You truly have a gift you generously share. ❤
God bless you, Julie.
They didn't want to hear it, denial is very strong. You explained this poor woman's situation so eloquently. Thank you for these videos and for being real 💜
I hear you , this is crazy. The patient has got to know …then again she wouldn’t be a full code. Everyone deserves to live their last days in peace and acceptance .
I have been a hospice /palliative care RN for 30 yrs . What a travesty when this happens .So sorry that you had to go thru this but glad you were there to get the family thinking .
Would love to see a conversation between you and Julie:)
Oooo I hear you. I’m a radiation therapist and see patients daily that I wish the Dr’s would just sit them down and tell them what going on.
Because people enable that belief because they are not doing their job (in helping and listening to what the family is saying and talking about).
This is an example of how when someone doesn't do the job in the chain, it affects the people/medical personnel (and patient and family), down the line and makes everything more difficult.
I think you are showing just one example of this is the medical field. It can happen in any working/care taking situation.
The heroes are the people who stop & correct the path as best they can, at the time.
You are one of those HEROES.
I visit many stage IV cancer patients on TH-cam, generally in their late thirties who have continuously been led along by their doctors. I truly believe that doctors are afraid to be honest with their patients. They don’t seem to want to broach the subject and instead keep them coming back to the hospital for more surgery and treatments that may or may not prolong their lives.
I’m not surprised that families haven’t had the talk with their physician. I watched one wonderful mother deteriorate into a bedridden skeleton without hospice ever being mentioned. And when she finally had to be carried into a wheelchair, her doctor required her to make an arduous visit to see him for her final visit. I found that heartbreaking and unnecessary. Where is the compassion? Where is the honesty?
I'm so sorry you were put in that situation. 💕💕💕
Sadly I'm not surprised. As a nurse I've had to confront many doctors about them not sharing the prognosis with the patients. I've had doctors tell me it's because "maybe there's more we can do" or "they're not ready to hear that." Even if there are further options the patient has the right to know where their current health is at. I finally got fed up with the extend life at all costs despite suffering attitude and changed to hospice nursing.
I would love to see a conversation between you and Julie and the other hospice nurses that comment.
Julie you broke my heart! What a wonderful person and fabulous nurse you are!! What an Angel.
This kind of happened to us we had no idea my dad was going to die he had been home complaining his hip hurt we finally got him to go check out his hip he was in the hospital 2 days in hospice 2 days and he died that morning it was so fast my dad was 90 we had no idea he was going to go that fast he was in great health his entire life and seemed fine at home except for the pain in his hip and problems walking. Life is short eternity is forever. I love ur channel I found it the day after my dad died I wish I would have found it sooner it would have helped.
That's simply horrible but I find it hard to believe the provider didn't tell the patient or family that she was terminal. Some people live in denial. My Mom just started hospice, she is 89 , 90 in July God willing and while my mind is crippled with grief just missing how she was just a short while ago and knowing her time here is short, I can't help myself thinking she could get better just to cope. I miss our fun times together so much some days I just can't stand it but your channel helps so much making this normal. Hospice has been such a comfort too. Thank you Julie!
You are the perfect person to teach us what a “ good death” should be and what we should expect. Thank you for your energy and love.
Thank you for being a clarion truth-explainer. We need more truth tellers that care like this.
Julie, you are an Angel, thank you for what you do for people in Hospice. I wish every nurse and healthcare professional was like you.
Thank you for your compassion. Gives me hope that they’re more nurses out there just like you ❤
Not many mind
Oh my gosh that is so sad. So when you sat them down to clarify things, they denied that she was dying? I hope we get a part 2 of this if you go back ♥️
I hope so, too
Thank you for educating. Much needed.
I feel sorry for her and so sorry you have to go through this disservice to her. The doctor needs to speak with this family. If she codes and is brought back, how will she be??? Still dying and with broken ribs.
Much love to you, Julie! You are strong. I hope we all give you some extra strength.
It could also be a case of denial. My father was on dialysis, his arteries were clogged, his right foot was going black and would need to be amputated but he was not fit for surgery. He was in immense vascular pain and on fentanyl and other pain meds. His vascular and nephrology surgeons said that he could continue his dialysis and could live for another few months but his pain level would increase or he could stop dialysis and would probably live for another 2 weeks. I was my fathers only carer and knew his wishes so I called each of my siblings and explained that I was going to ask the doctors to stop dialysis. One of my siblings was shocked with me and said "oh we can't do that, give him more time to get used the idea". I had to explain everything to him and eventually ask him if we allowed dad to continue dialysis and cause his pain level to rise in severity, were we being selfish and really only giving ourselves more time. He eventually agreed with my choice and my dad passed away peacefully less than a week later.
When my Aunt's cancer returned with a vengeance, she told NO ONE! Her first go around with cancer treatment had slowed progression, but SHE KNEW IT WOULD RETURN. She opted no treatment and only Hospice care for her last 10 days, BECAUSE SHE KNEW everyone would tell her to fight. She chose peace, quiet and a calm uninterferred Death with dignity.
Shouldn't their doctor tell them before they enter hospice? I'm so sorry. It shouldn't be up to you. It's so hard to take on. Bless you. It must be very frustrating. Just know, you are doing a service to so many. Not just those at end of life, your vids help people more than you could possibly imagine. :)
My dad was in ICU for weeks where they did so many invasive, painful things to heal him. But in the end they say they’re done and he needs to go to Rehab, 45 minutes away. He couldn’t talk, walk or swallow. I was the one that had to say “No”, I could sense he was dying. So sure enough, he died three days later in hospice. The system is broken and cruel.
Thank you for all you do! I had similar situation with my mom and dementia diagnosis. No one would come out and say it, even when asked point blank. They just wanted her to keep coming back for evaluations. They made her feel horrible so I stopped taking her. Years later she is now on hospice (I had to fight for it) because she would not have wanted all that craziness.
😢😢😢😢my heart hurts..just immense prayers over you, this family, this darling precious lady… I’m so glad you are there for them in this extremely difficult time.. whether they want to hear you or not.. your wise, gentle counsel and energies are still right there with them…
Sadly, as long as the insurance is good and the bills are being paid, the hospital will keep providing full measures for the patient. Cancer patients bring big money to health care facilities and Doctors.
This happened with my Dad. They see Dollars not end of life. It’s horrible.
Bless YOU Julie for a beautiful kind heart. Thank you for every aspect of your patient care. 🙏✝️
Which is why we need to eradicate health insurance and send those funds directly to patient care instead of paying the salaries of desk jockeys who do nothing productive.
One super big hug for YOU Julie 🤗. Some people ( whole families !!! )….. just do NOT want to hear what you say….
It is very hard and unbelievable, but you know Julie… YOU DO IT ALL RIGHT AND WITH SO MUCH LOVE AND PATIENCE ❤. Know that “ you “ did all you can and try to mentally distance yourself. If people don’t want to hear you there’s nothing you can do. Stay YOU 👍🏽❤️
Julie, as a social worker I had an occasion where I had to "translate" a doctor's kind words of encouragement to reality for a patient. Her only concern was for the doctor, saying that it must have been hard for him to try and tell her that she was going to die. It brings tears to my eyes over thirty years later. Another time a patient's husband had stopped her pain medication because of a misunderstanding due to a faulty translation. I was able to explain the actual use of the medication and as a result the lady had pain relief for the last three days of her life. Not acceptable, but at least she had that. Good communication is a crap shoot at best, and in our professions it's perhaps one of the most important skills we have. Given, some patients and/or families simply don't want to hear what they don't want to hear. But, despite the mix up ( I'd usually use more earthy language, but we're PG here), you did your job. There's no getting back the time that this family didn't have to prepare themselves for the inevitable, but you did your job. You gave them the gift of being able to grieve together, to cry, to remember. You gave them the time that was left. They will always remember you for that - of that, I'm certain. You did your job Julie. Thanks.
Oh Julie, I sit here and listen to your story and am so sad. I don't know what to say. Oh how I wish they could understand.... Thank you so much for all you do.
You are such a sweet blessing ❤
PS May God Bless you abundantly for your Loving compassion...
This video should be included in *all* palliative/hospice/end-of-life care training, and required viewing by all medical personnel involved! Bless you for all you do, you're truly an angel on Earth! Please take as special care of yourself that you give to others!
🤗🕊️🙏❤️🕯️
I can feel your frustration. We are all fucked up. Some more than others.
Bless your heart that you should STILL care so much after all you have experienced!
You are such a gift to this world with that big beautiful heart. You are doing Gods work.Thank you for teach us.