My wife is in a nursing home in WI. She is in what they call 'comfort care' now. It sounds somewhat like palliative care. Thanks for the explanation. I had to sign something saying the nurses would keep her comfortable but not take her to the Emergency Department so it not quite like what you described as palliative care but sounds similar.
My mom is in Hospice Care at home. The nurses are wonderful. The siblings are taking care of my mom and dad 24/7. My question is why isn't there a way to give a dementia patient medicine such as Ativan through a patch on the skin? My mom fights and will not take her medicine. It's been 12 weeks of my siblings spending 70 hours a week there. My dad had a widow-maker situation and he's not strong or allowed to take care of her. These are two people that have been married 65 years and taught all of their children how to love. My dad spends every minute sitting next to my mom and he's there for everything he can do. My sister went and bought a king-size bed thinking that they could use more space. Now, when they peak in the room, you couldn't put a piece of paper between my parents. My dad just whispers loving things to her while she sleeps. I know how it is to take care of an incontinent person because, my husband had been in a coma and I brought him home and I did all of the hospice care. They found out he had cancer when he woke up. I only slept for 3 hours a night for 6 months. I was seeing lots of pretty colors and hallucinating. I don't regret a minute of taking care of him for two-and-a-half years. I know my dad just wants my mom to be at home but, he knows that my siblings are burning out. Back to the question, is there a way to administer her Seroquel at night or Ativan during the day without her feeling like she's being attacked and fighting back? If not, I think they should develop a patch for sedatives so you could just put it on their skin when you're rubbing their back and they wouldn't know. Thank you for taking away the fear around dying. My husband went into the kitchen on his birthday and I went in after him. He was on his knees and I laid him on the floor and I looked into his eyes and I said, I love you. He mouthed, I love... and, he died with my hands on his chest. It was a gift because, I was with him when he took his last breath. I know that everything is going to be okay. 💕 Thank you for what you do and for all of the heart and compassion that you put into it. You deserve a handsome man who loves you. 😊
I've recently followed your channel. I'm from the other side of the globe and all I can say is that nearing death phenomenon are all identical whichever part of the world you're in. As for "visioning" I had one experience with my dying godmother when it was more than just visioning that she experienced. She even WENT with the ghost out for a romantic dinner, before returning to her body in the deathbed. It was her dead husband who had come to ask her out for a date. She spoke about it after returning to her body. A few days later she passed.
You say that Hospice mostly involves caregiving by a person's family. What is done if the person doesn't have family who can (or are willing to) care for them?
I did palliative care for my 87 year old dad who also lived with us for 11 years, I did feel alone sometimes as my dad went downhill quickly from learning that he had aggressive bladder cancer to his death was 6 weeks.. I did everything for my dad, changed his diapers, sponge bathe him and would lay awake hearing him breathe.. The last day of two he refused his meds, water then food and I couldn’t lift him good and decided to phone hospice and thankfully they had a bed available, I cried tears telling my dad but I did not leave his side for 5 days and nights in hospice, I was a daughter to him during the last few days of his life instead of a caregiver.. I talked, sang listen to music and held his hand .. even though he was unconscious but knew I was there.. The best gift I ever gave him was holding his hand until he saw my mom again after 21 years❤ I miss him so, but so grateful I was there for him
My mother passed last Friday 5/26. If I hadn't found your channel a few weeks ago and learned what to expect, the various stages leading up to her passing, I would have been more stressed than I was. A great big thank you for educating me on what to expect and why to expect it. It was so helpful at an extremely stressful time. God Bless You Hospice Nurse Julie!
You may be able to receive grief counseling should you need that for up to a year. Check with your hospice provider. Sincere condolences on your loss. Been there, you will get through it.
Long term Healthcare Administrator here: This woman knows what she is talking about. This is very well worded, and very well presented. It can be complicated, but she did a great job explaining it.
Yes. This video should go to the top of RUclips it's such a public service. Doctors avoid discussing these subjects and most of all educating patients on these subjects. They get a couple of lectures on it in medical school and they are back to aggressive diagnosis and treatment. It's just another symptom in our sick American healthcare system.
I am 69, have end stage renal disease. I have chosen not to do dialysis. I was on hospice for a few months last year after a series of kidney infections left me weak & in need of more care than I could give myself. It was nice having a nurse & cna come out weekly to assist with showers & lite housekeeping. I became stronger after clearing the kidney infections and moved to palliative care. A nurse visits me monthly to check in with me & we FaceTime the PA. I appreciate both services and know I will eventually be back on hospice at some point. I am thankful hospice will be there when the time comes. Thank you for educating us on the difference.
In Utah when my mom asked for palliative care for my MS stepfather, the nurse was very rude and threatened on the second visit that if my mom did not do everything she said that she had the power to take him out of the house and put him in a facility that would take my mom's house away to pay for his needs. She had to immediately end the service because if this nurse went through with her threats my mom would be homeless. A lot of corruption in Utah. Not sure if this is often in other States. But my family members in Maine have been treated extremely well. They went above and beyond in their care. so I'm impressed with the state of Maine
I am praying for you I don't know if you know Jesus as your savior and Lord but if you don't please read John 3:16 in the Bible I know Jesus is my Lord and Savior and he is giving me such peace through all the hard times of life
Hospice Nurse Julie, I write to you as my mother, 92, Father, 89 have commuted unaided from Texas to Colorado for another summer season. My wife’s Grandmother 95, and her great aunt.,93 lived in MO, and had to be brought to our home because they could no longer care for themselves. Long story short, the Great Aunt went on Hospice immediately, and it was awesome. She passed after a month in our home with the aid of Hospice nurses and caregivers. Her Grandmother while visiting the Fort Worth Zoo on a Wednesday came home and was ready to go. Hospice to the rescue. Visits, medicine, care, appliances. She was gone in a week. The information you are providing needs to be on a NETWORK TELEVISION SHOW! It’s that critical. I’m only 60, retired, and am sure I have set myself through my chosen lifestyle to find my demise in some unique way. Your explanations are comforting! Thank you! Bob
I am a former Hospice and Home Health Aide. I wish there was a Medicare rule that would allow someone of the age of 90 y/o to be eligible for hospice. They may not have a terminal illness, but I feel at their age, anything can happen at any time! Many times just have that extra hospice care can benefit them tremendously! And the family too!
@hollyhowes8517 well I am glad I had nursing experience my Grand mother owned her home but what ever you get fro the goverment they want you to be indigent ok so I kept her at home and cared for her 24/7 plus a lot of paper work to qualify my aunt same thing they wanted her to use up the equity in her home so no thanks
I am on palliative care to help with my pain control from my cancer and reactions to medications. My palliative nurse and home visiting nurse feel I should go on hospice. I live alone and at 76 try to do the best I can to maintain my house. They say Medicare will not pay for help to stay in my home. I also would have to pay to stay in an assisted living if I went that way. If I stay on palliative care I need Part D drug plan to help cover all my meds but if I go on hospice I do not need a drug plan as all meds are provided under hospice? I find it hard to know the best way to spend out my days. At least my home is paid for.
@@gvet47 May the Lord bless & keep you safe & your mind well. My Mom came to live with me when my Pop went home to Jesus in June. She has several issues & dementia. She just turned 77 & after 60 yrs of marriage, she was just going fast. I promised Pop, she's coming home to live with us. While I know the past several months has been a rollercoaster ride of emotions. Yes, selling (hope) the home. But she too is on Hospice Care & it's been a blessing. Was also for Pop. That the family was by his side, he was able to stay home. So, to answer your question, NO Medicare will not "pay" for you to have in home nurse staff. That is big dollars & places as Visiting Angels. They come in do housework, cook, clean, wash. I had a great experience when I cared for my best girlfriend's dad. We had a month wait to get him into an Assisted Living Facility. He was late stage Parkinsons & having seizures. Now if you are in Hospice Care now, you should qualify to get into one of the facilities they use. But you will be in a room with another woman or man. No co-ed dorms. Shared. So, you do not get the "full" apartment type rooming/home as in Assisted Living. That is the only downfall. No absolute privacy. Yes, you need to keep your Part D. Mainly if you're on any heart/thyroid, diabetes, so on meds. Those they will send to the pharmacy of your choice. But the pain meds they do cover in Hospice. Now, the downside is that they can only fill these pain meds for 2 weeks at a time. They do have cna's that can come out a few times a week to assist with bathing. Praying for you.
I know a 100 year old woman who still lives independently and doesn't even require readers! No reading glasses, it is insane. She is healthy, no meds, bright, alert, engaged, and independent. Everyone is different, thankfully.
No, no, no. There are so many people aged 90+ that you cannot possibly have them all getting care based solely on their age. They must first have a grave illness. My grandmother and 2 of her children died in their 90s, without illnesses, their own beds. That's the way it should be. .
When my dad died - and this was 30 yrs ago - from pancreatic cancer my mom was a nurse so was able to do a lot of things such as bath him that they would have done and I specifically remember coming over one time and I had recently gotten married but lived very close so I was there a lot but I remember specifically coming over and they were vacuuming. It wasn’t like our house was dirty but I think they wanted to do something for us but there wasn’t really anything to do. They were wonderful. I will never forget my dads nurse. She cried when my dad passed away. You guys are very special people!!!❤️
My husband had a home nurse for about 6 months to take care of his picc and draw blood every week. He had his picc out in February, and they still contact each other about twice a month. His nurse had a first baby while we were working on our home, they exchange photos and they know if one needs the other, they’ll be there. Shout out to the home nurses, you’d make more money in the hospital, but you care for people in their home, accept unneeded supplies as care changes and donate them to people without insurance and homeless shelters. Y’all the real folk. Love you and appreciate you.
My father died at home on hospice care and my husband was on palliative care at home and transitioned to hospice care in a nursing home just before he passed away, so I got to be familiar with the differences. Thank you for such a clear explanation of the two. That is exactly the distinction I saw played out.
Just a quick note: that “have six months to live thing” is just a guideline. It is guided by a phrase something like “in the physician’s best estimate based on the disease process”. I had patients on for less than 24 hours. And some that made it to 2 yrs. Our hospice really liked to have the patient come on sooner rather than later. It gives the hospice a chance to really get to know the patient and family better. It allows us to help everyone understand and plan for what is happening.
Great explanation of the difference of Hospice vs Palliative care! My mom had Alzheimer and on this past summer my mom became very aggressive/agitated that it became imposible to help her with baths neither my sister, I and nurses aides who was requested by mom’s doctor was able to help. This desease was new to us, so we didn’t know we could reach out to Hospice. We even changed doctors because they were not helping with medication to see if that would help calm her down. My parent’s health insurance rep. was the one who got us in touch with hospice. Once hospice took over she was not aggressive or agitated due to heavy medication. She was already in the last stage, so she had lost a lot of weight. Hospice staff was awesome. They were all so kind and attentive to my mom’s needs. After two months of Hospice coming in my mom passed away on October of this year. She died peacefully with no complications. She just stopped eating or drinking for 10 days which this the last thing they stop doing because they have forgotten how to swallow. I would recommend Hospice to any one who wants their love one to be taken care in their home. Mom never left her house. My dad was great taking care of her when my sister and I couldn’t be there with them. He wanted her to be in their home and with hospice we were able to grant his wish and our. Nursing home was never an option.
I’ve had palliative care since Oct 2022 it’s been a blessing having them! The doctor makes home visits and FaceTime visits! Palliative care has been amazing for pain management and anxiety for me to have a quality of life as I was diagnosed with stage II Cholangiocarcinoma. We talk about when transitioning to hospice when that time comes.
My mom has stage 4 bone cancer radiation has helped with the pain but hasn't shrank the tumor but hasn't gotten bigger. She going have a nurse help her in home she starts chemo next week but what upsets me is that they're going to give her a non pill version first which the pill version I heard it is a lot better. I just want my mom to have an extra 5 years. Her pain has been up and down just pray for my mom please
Life is terminal. My dad is 94, and from watching you I have learned that he is in his end-stage. He's been healthy for most of his life. He doesn't qualify for hospice. But thank God you've explained what's going to happen and I can see it coming. You have made this process so much easier for me. Thank you so much. CL
I have copd and emphysema worked the last 28 years in nursing homes in the maintenance department and I have learned more in the last 16 minutes last 20 years. Always great respect for the nurses. Thank you for sharing. 🙏
Children are different. Thankfully. I’m a pediatric hospice nurse and they can take advantage of concurrent care. This means that they get all the benefit of hospice while they are still able to pursue disease directed care. It’s made a huge difference for kiddos and their families to be able to build that relationship. Some kiddos are in palliative care/hospice for years. It’s a beautiful thing….hospice care 😊
Hospis was so kind to my MIL before she passed 2months ago.They came and spent time,had meds for her, bathed her, gave her love.Taught me how to help her
I am in a chronic pain group on Facebook, a couple of them actually. I’ve heard palliative care talked about in those groups. They talk about it because we always wonder if those of us in unrelenting chronic pain would get medicated the way we actually need to be, if in fact we could be on palliative care. Chronic pain patients currently and for the past few years, have not been treated properly for pain, because of the opioid overdose crisis. The powers at be somehow for some reason, thought that the chronic pain patients were the reason for all the overdoses in the United States. We were not the reason for them. Period.
Nan is correct. Chronic pain patients have been treated horribly and denied pain relief via opiod analgesics since 2016 when the CDC guidelines for opiod perscribing written by anti opiod zealots PROP who have ties to addiction clinics and made money from the government money grab suing the pharmaceutical companies. We , along with doctors are being falsely accused of the reason for the addiction problem which was Never over perscribing but Fentanyl and Heroin thats flooding our country. Even the DEA knows that the war on drugs can not be won . Its the lack of hope , no jobs , housing etc that is the real cause of addiction. Most chronic pain patients can not get even basic help let alone a doctor to care for them . If abandoned by their doctor its almost impossible to get another doctor to take them as a patient who needs opiods. Our dea is persecuting doctors for perscribing saying they are perscribing outside the usual manner despite No guidelines for perscribing. Its time to get the government out of medical care and the DEA to stand down until Congress can start investigating them . Don't expect your pain to be treated in a compassionate manner anymore. Amputations and mastectomies are given Tylenol now and the suffering is unbelievable. All over the country this is happening. Even children with terminal illnesses are being denied opiods because their doctors are terrified of the government and the DEA witch hunt. God help us all
They can't get it through their heads that the reason for the crisis is people taking them illegally to get high,NOT people -especially older-who legitimately need it for pain,causing millions to suffer needlessly.We went through this in the 1980s and 90s until finally the giving of medical pain relief was alliwed,only for them to crack down again.
People with severe chronic pain in the past were prescribed opioids because we had already tried everything else. In my case, it was eleven long years of trying everything under the sun. Opioids were the only thing that helped. I was far from pain free, but they took enough of the edge off that I could function again. Tragically, because of changes in regulations, doctors won't prescribe opioids for those who need them most. Statistically speaking, people with chronic pain, especially seniors, do NOT abuse meds. But now we are the collateral damage of the "opioid crisis." The real crisis is leaving those in severe pain who never abused meds to suffer in excruciating pain. Sadly, many have taken their own lives and turned to street drugs since doctors can/will no longer help them. This is a huge crisis effecting so many people. (Julie, you are absolutely wonderful! I have learned so much from your posts. Thank you for all that you do.)
I fell off a roof and landed in a sitting position on a blacktop drive. Had back and neck surgeries plus 63 epidural spinal injections, four quadrants of the nerves burned, nothing helped I was still in chronic pain. Went to pain management was taking 4-6 Vicodin per day as prescribed which helped me to function. Tried other meds, they didn't work. I NEVER once did I abuse my prescription!!! When first lady Michelle Obama got into the White House, my life changed as well as everyone in the U.S.A. who suffered with severe chronic pain. My pain management doctor told me the federal government (Michelle) is cracking down on opioids and I have to cut you off! Has any of you EVER read about someone dying from Vicodin??Now people are dying from fentanyl, I'm sure our open boarders have nothing to do with it!! Liberals have destroyed this once great Nation!!! I pray God will make us all whole again with no pain. 🙏
Julie, thank you for all of your teaching about end of life. As a palliative care nurse, besides educating about symptom management, I think its also important to talk about the other "pillars" of palliative care. That is, continued goals of care conversations and advance care planning (code status). Many are not aware of the components of resuscitation. If your heart stops or you stop breathing and you are a full code (desire full resuscitation), medical personnel will press on your chest (perform chest compressions, often inadvertently breaking ribs), shock your heart, and put a breathing tube down your throat. If you have a terminal diagnosis, these things won't help you, may prolong life, but also suffering. Whereas a do not resuscitate or dnr is when medical personnel do not do those things with a focus on comfort instead.These are important things to talk about. Most people on hospice are a dnr as comfort is the goal of care. Palliative care strives to educate about disease states, explaining what to expect as a disease progresses so that people can be as educated as possible so that they can make the best decisions that they feel are right for them. So, although palliative care is focused on any symptom management (pain, anxiety, even constipation as many chronically ill people are on pain meds that can cause constipation), palliative care is so much more. When someone may be hospice appropriate but not emotionally ready for hospice, palliative care is a good option.
My mom had a meeting with the palliative care in feb & it was basically a waste of time - they did nothing & said let’s just see what the drs say & work with them. My uncle asked about hospice but they told us we really didn’t need it due to her issues. She went into the hospital on 1/12 & passed away in ICU on 3/4. Hugs to anyone going through this or who have lost loved ones. ❤❤❤❤❤❤
My sister & I took care of my Dad on Hospice and we loved the care they gave not only to my Dad, but to us! When my Mom was diagnosed with Stage 4 small cell kung cancer, we again bought in Hospice, although we had to go with a different agency due to staffing. Again, such wonderful care! My Irish Twin brother is now in Hospice House because, due to his dementia, we couldn't care for him at home. I never let a chance go by without singing the praises of Hospice. People think Hospice is where you go to die! After my experiences, I say it's where you go to live! You can be safe & comfortable with much less anxiety! ! No visiting hours, overhead lights on when you're sleeping, nobody waking you up to take vitals, etc! You can be with your family & friends, and have those moments that they will carry with them long after you're gone!
My husband was on hospice and it was awful for him and for me. Having said that, I would welcome hospice if I or my family needed it. I.m in a different state now and hopefully will be much better.
This is so important because it prepares each of us for the day we have to make the inevitable decision. We have to be REAL about this and stop pussyfooting. Fear is not an option, preparedness is. ❤Thank you so much for sharing your experience. ❤
Hi. I’m really glad that you said that what you say only applies in America. I’m in the U.K. and the hospice movement is quite different. Hospice is a charity that runs facilities and has home hospice . Hospice is available for anyone who has a life limiting disease. It offers rest bite for families with children or adults with life limiting disease. Our hospice sounds like an amalgamation of both the us hospice and the us palliative care. I’ve had terrific experience with the U.K. hospice movement xxxxx
Nurse Julie thank you so much. My husband has Parkinson's and is currently in the hospital. He's in his latest stage. I was looking into placing him in a nursing rehab home but my heart cannot do it. I just found an agency that offers hospice care. He will be coming home to hospice care. You explained it so well. I hope that hospice can offer comfort and peace to my husband as we navigate this rough season in our lives.
Thank you Julie for explaining Palliative care. My daughters oncologist suggested Palliative care for her. She had Chemo, missed most of her radiation treatments. 2 tumors have shrunk. They has surgery in mind but postponed that for awhile and to be checked in two months to see if cancer has metastasized. I was kept in the dark about my daughters treatments and I'm somewhat confused about her diagnosis. Palliative care seems like a good program. I'm still afraid what my daughters future looks like. I like your channel and how candid you are. Thank you again!!
I lost a daughter to cancer at age 33, five years later and another daughter just finished her journey and survived. But during this, Dr. Annette Bozworth (internal Dr) has a RUclips channel talked about how she cured her life threatening cancer without chemo, and radiation, etc. She also has a book about it and how she did it. It seems we can cure most or all cancers, diabetes, dementia, fibromyalgia, etc. It's worth a try to watch her videos as well. To everyone who suffers lots of pain , cancer etc. I know there is a solution without meds.
5 years ago my husband was diagnosed with Stage 4 cancer from Agent Orange exposure. The VA automatically set him up with Palliative Care. They saw him everytime he had a treatment, ordering all his meds. It was a 2 to 3 hour visit because everyone came in to see him. Pharmacy, Nutrition, Physical Therapy to assess him for equipment to take home and Social Work. He has been in remission for 3 years now so now he see them every 3 months. So the VA automatically set up their vets with any long term illness with PC.
It’s called the Pact Act. Dad diagnosed with Parkinson’s Dementia from Agent Orange during Vietnam service. Trouble is I moved him from a different state where I have to get VA benefits transferred. This seems to be time consuming to set up a new PCP.
It’s called the Pact Act. Dad diagnosed with Parkinson’s Dementia from Agent Orange during Vietnam service. Trouble is I moved him from a different state where I have to get VA benefits transferred. This seems to be time consuming to set up a new PCP.
Julie, first, thank you for your expertise and ability to teach us how to be good consumers of end of life and better life care. My 91 year old father (with moderate dementia and related sleep deprivation) will soon be leaving skilled care and entering long term care following a bout of COVID pneumonia. While in the hospital, Palliative Care helpfully reached out for a discussion regarding DNR status. They explained that their service would ease Dad’s transition into LTC. Thanks to you, now I understand how they can help. They won’t be able to alter his severe short term memory loss and poor judgement, but hopefully they can manage his insomnia!
I learn so much from your videos--Thank You! You explain things in a manner that can be understood by people not in the medical field. Thank you again.
Thank you for the explanations. I had a bad experience with Hospice for my Mom in ‘16. They did not work on weekends and had a phone line to a receptionist, not a nurse, 60 miles away. She died on a Sunday. At this time my husband has multiple myeloma with kidney failure. He has been resuscitated twice. Palliative care has been recommended to us. I knew it was not Hospice but asked if it was support. Yes was part of the answer. I will pursue PC as maybe it will make his life easier. And, I must mention the stress it has put on me. Thank you again; I needed this info. Linda in VA.
Trust me. This is 100% true. My mum spent her last 3 months on a UK oncology ward over Christmas. My big sisters too charge, I couldn’t deal with it. On the day she died my sisters begged them not to put her in the metal coffin/transfer thing. You see we had stayed 24/7 (in shifts) so knew the routine. Curtains all shut, squeaky wheel trolly in then out and curtains opened to see it empty but being remade. The staff could see my sisters and dads reaction so they put an oxygen mask over mums face and then transferred her to the mortuary through the hospital with family alongside. People not knowing that was a deceased person. Complete compassion. On the day of mums funeral the first to come and hug me was a nursing assistant from mums ward. My mum was 62. Amazing people. My Dad, 63, was diagnosed with stomach cancer 6 weeks later and died in a hospice 5 months later. I was there for that. So peaceful. So calm. A good death is real people.
Thank you for making people aware that most hospice care is in the home and there needs to be a main home caregiver. We teach our clients and family how to manage a terminal condition, keeping the client comfortable. Palliative care is symptom management also. The difference is curative therapies can be pursued w palliative care.
Grandma is 90 years old, but not considered terminal!!!!!!. What!??? Grandma's been beating the odds as it stands. Thank you so much for your channel. Just began working at a facility which has a lot of end-of-life clients. Your videos have helped me deal with seeing and interacting with individuals who are at end of life. I have also had to deal with many end of life situations with quite a number of pets of mine, so end of life doesn't seem so scary to me. I also have very strong religious beliefs which help me through times of passing. But I just wanted to let you know, your videos are very helpful and informative. Keep going.
Thanks for the most valuable information regarding these two programs. I'm the caregiver for my brother who has end stage COPD, chronic respiratory failure, CHF, and a few other conditions. We're searching out information on both of these programs and this video has been most helpful in explaining the differences. We've gotten some misinformation regarding hospice which has resulted in a lot of unnecessary suffering and fear. Thanks so much for what you're doing, it's very much needed!
I sure wish I’d had learned this before my dad died of ALS 8 years ago. Thank you so much for explaining this as my sister is now going through stage 4 cancer and it helps to understand the difference.
I wish I had found your videos before my mom passed. I didn't realize that she was declining in health as fast as she was. She was in a nursing home and of sound mind so maybe the staff and her were having discussions. It was her way to keep things from us. I saw her on Thursday she seemed okay, made plans to have dinner on Sunday....then the nursing home had a round of Covid and no visitors. I called Sunday, just as the nurse was talking to the staff Dr. We were able to arrange for compassionate visit and she passed later Sunday night. I just wish we had a chance to call in Hospice.
Outstanding talk. Had my Mom on Hospice a few years ago. While it was a sad choice, it was a good one. She was happy to be home and done with the hospital.
Thank you for clarifying the difference between the two options. I am in Canada so coverage may be different, but the situations are the same. I lost my brother to cancer approx. 2 years ago (he was single), and at the time of his illness, we had a Home Care nurse come to our house as he was recovering after surgery here. After my brother's surgery, it was the Home Care Nurse who introduced the word "palliative care", which was a shock at the time. I really relate to everything you are saying here. I was the main care giver for my brother as we were very close and I was happy to do so, but as time went on, he needed more care and he preferred to return home to his apartment. He wanted some independence during his chemo treatment but he was unwilling to work with some of the support workers who came to his home. It was difficult, but he/we managed for a while. In hindsight, I am happy that we helped him stay in his apt as long as possible, as that is what he wanted, but he eventually passed away in hospital within the year. I think when you are in the "thick of it" caring for your loved one it can be hard to see the forest for the trees. You just want them to have the best care they can get, but when that person is in denial and fighting for their life, you have to support them. My brother did not want to hear about end of life, and he stuck with that until he couldn't any more. Caregivers go through a lot and I thank God for the support of the end of life people who came to us and provided all their help. They are truly angels. Your video has helped clear up some of the confusion of what I felt we went through between Hospice/vs Palliative care and want to thank you for that. Your videos are really helpful, as grieving takes time and every situation is different.
Hi Julie, I recently found your channel and I thank you so much for the videos and information that you give, it has already given me so much help and helped to reduce some of my fears. In short, I am 62 years old with severe COPD, CHF, and now a recent diagnosis of Stage 4 lung cancer as well as many other issues I suffer with for many years. I have been declining quite quickly now. I know that my time is limited and I plan on watching your videos with my children this weekend so we can discuss more about my care and they can also see what to expect at my end. Yes I am scared to death of dieing, I had assumed I would die a slow painful death gasping for my last breath, Thankfully I have understood from your videos that those symptoms will be confronted to make the process easier, that has helped me so much and I can't thank you enough for what you have produced and shown, it really gives great comfort, my words can not express how much. Sorry for rambling on so much, I'll get to my question. I am really confused on where I would like to pass on, Whether at home or in the hospital? Could you please share some insight of your personal opinion and thoughts on this please? Thank you again so much Julie.
Julie, Thank You ! Finally someone has simplified my questions .During my mom's care the visits to the Dr 's office were many but not one nurse or Dr mentioned palliative care. I accidentally came across palliative care but it came a little too late . I appreciate the information you have provided and again, Thank You ! ❤
With a daughter in law with Brain cancer I’m glad I found this, I’m up there in years so it’s also good for me to know all this for myself and hubby. My mom died, just never woke up one morning, nice way to go. Dad had a month of hospitalization and died. Never had to deal with this, but palliative care was a new word for me with dad.
I wish someone had explained hospice to me clearly when my mom was at end-of-life. Despite asking all the questions I knew to ask, I did not understand that most everything would fall to myself and my siblings. It was overwhelming, and I certainly would have made different decisions for Mom and for ourselves had I known. Thanks for sharing this valuable information with us.
Hey thanks for this helpful video! As you accurately said, the focus of a palliative team varies a lot depending on the team and the needs of the particular patient. I like to describe palliative care as an extra layer of support to make sure the medical team stays focused on what matters most to the patient (since symptom management needs alone may not be an issue). Keep up the great content 🙌🏻
I found out to late about palliative care for my husband that was diagnosed with lung cancer. When the nurse came to our home to evaluate my husband, she recommended hospice. He was brought t o hospice on a Monday and passed on Thursday. Palliative Care would have helped my husband and myself significantly.
I’m a geriatric nurse and I just learned so much from you. I work in LTC and we usually have at least one or moreHospice patients. At least 1/4 of them eventually are denied Hospice after a few months. Palliative care seems to fit those quarter but I have never had a resident on Palliative care. Thank you I would love to learn more.
My grandfather had glioblastoma, and started on hospice, then went to palliative care, and was about to go back on hospice when he passed as he had the cancer for years. But my grandmother on the other side of the family had glioblastoma and was only on hospice as she showed very little symptoms until end of life.
I so wish I had found your channel a few years ago prior to my mom dying during COVID. You are amazing & so very informative. I am currently in the process of becoming a death doula and I have relied on your channel greatly to learn as much as I possibly can. I have been around probably at least a dozen people who have passed, & I personally find it an incredible spiritual experience. I feel so drawn to want to be with people during the process of dying. Thank you so much for all that you do! Sending you love & light ❤✨
I'm on hospice since June 12, 2023 . I am now getting ready to go to palliative care due to the change I'm getting ready to make, I'm starting Sir Shere Y 90 Radium treatment on my liver. I was given 6 months to survive in June but with this treatment it should give me a longer time or quality of life and even though not a cure its should help to kill some of the tumor that has taken over my liver and arteries I pray 🙏🏼. This should be 3 months to know what it has done and pray it gives me kore life time. Hospice has been great for me. I'm confident with palliative care will be helpful. So I'm thankful and ok with the switch in care if need be I can get back on hospice if my life expectancy does not give me much time. Fight for your life and hospice and palliative care are where we need to be with a terminal illness. God bless everyone. We will get through the battle hospice or palliative. Amen
I think what I as an elder hate the most about our medical system is the lack one one doctor who knows you handles your care. I have so many specialists and they don’t agree and I go the hospital to only see the specialists partners and then, the hospitalist is there in the hospital but he doesn’t know you, but they start or stops some treatment …and the next day a new hospitalist shows up. For elderly patients this all the more exasperating because they have to repeat their health story. It’s overwhelming. And I am so sick of being asked what day it is! I wish it were 1975 and my GP was in charge. Knew me and the entire family and aunts cousins and grandparents.
My 101 year old friend with kidney stones and congestive heart failure and diabetes with great sensitivity to most drugs has had this hospital and doctor/specialist frustration over this past year. Very frustrating especially as she is still very mentally sharp and on top of her conditions. Often the doctors or nurses don't listen to her because of her age and don't pay attention to the fact she is lucid and sharp.
I so totally agree with you! Your already scared, confused and not feeling well and all that explaining again 😢! To much, I sometimes just shut down or blow up 😔 sorry for you to ❤
In recent weeks, I was railroaded into Home Hospice Care, skipping Palliative Care completely. Original cancer diagnosis was about a year too late. One radical surgery - a waste of time. Oncology made me sick with few positive results. Doc who made the original mis diagnosis wanted to remove and reconstruct the remaining healthy ear - nope. Hostile neighbors can't believe I'm not dead yet. The good news is I've noticeably improved with oxygen and additional meds. Nurses coming in twice a week are a god send. Sleep better although I 'm not getting wind in my sails until mid afternoon at the earliest. Unable to sleep in my bed - sleep well in my rocker recliner. My appetite has improved although my equilibrium is taking a beating. My elderly sister, who is a CNA, is driving 625 miles today to spend some time with me - her visit will be priceless. My daughter and her family are only able to visit once per month, for which I'm also grateful. I have no idea how much time I have left but I want to make the best of it. I'm determined to live out my life in my long paid for and recently renovated retirement home.
My elderly mother who was dying (they said she had weeks to live) got "kicked out' of hospice because her condition had "stabilised". They transferred her to a different outside care facility.This is NZ and Medicare doesn't play a role. I don't understand it even now. I felt really upset because it felt truly awful. She went from a lovely place to a dull facility that was no comparison.😪
My mother went to a hospice facility for her final week of life. Her internal defibrillator went off during dialysis n she was told that would happen at every treatment. We all felt, herself included, she would be able to be kept more comfortable at the facility. Thankfully the staff treated her with so much respect.
When my father in law had to make the decision between Hospice and Palliative this is how his Dr explained it to him and his family. He asked the patient, "do you prefer "Quality" or "Quantity" of life? He went on to explain the difference. He said, "hospice will do all they can to keep the patient as comfortable until end of life. Pallative will care for and give the patient the best care they possibly can in order to extend their days of life here on earth until end of life. My father in law chose hospice because he knew and felt he was at the end of his life and wanted the best care (quality. So sometimes the patient just knows which they prefer. If the patient is able to choose, they should be the ones to say. ❤
My husband died of exposure to Agent Orange. He was in the VA hospital Rex B. Robot VA hospital. Hosprus, not Hospice. I don't know if there is a difference. Where right there with us. They were fantastic. They gave Me a paper and it told Me how he was dying. That was a blessing.
I love your channel. I appreciate that you use this platform to demystify the details of end of life decisions in a clear way for anyone to understand. I am not afraid of death but I know many people are. Postponing this learning process makes us ignorant and ultimately puts the burden on people "we love." Every video is relevant. Thanks a million for what you do. ❤
My husband was put on palliative care, and then about a week 1/2 later put on hospice he died a little less than two months after he was put on it from brain cancer meningioma and edema
The draw back to hospice is that the family provides the care. If there is a small family it can be very taxing on the family. I took care of my husband for years and by the “end of life” I was totally wore out and needed relief.
I'm confused.If the family does everything,and you can't get medical care in hospice besides.how is that any different than keeping your loved one at home?
My husband is on hospice he is getting a bed, table plus he got a walker and wheelchair were even getting sheets and a blanket all his meds are taken care and even his cremation will be taken care of he is a vet so VA pays for some stuff he has less than 3 months we also have oxygen tank and a machine that helps him breathe I can get a person come in once a week to clean my house which I declined my last husband was on hospice and the hospice in CA and now in MO are basically the same and all the staff in both places were phenomenal great ppl very caring and very professional I'm so thankful this is available I've learned more things from your videos thank you
I see your You Tube reward in the background. Incidentally, I know this is off the subject, my Mom passed away 4 years ago, and I saw her do the death rally, but I didn't know what was happening until I found your channel. I'm glad I have found your channel.
Thank you. This is a great presentation! One note for your viewers who are not on Medicare but have been told they have a terminal illness. Though it varies state by state, Medicaid does have a hospice program as well. I work in the poorest state in the United States and we get many patients who have Medicaid as the payor source. Usually these patients have longstanding chronic medical conditions and lack of access to adequate medical care. At some point they end up in a hospital and referred to our agency.
To qualify for Medicaid, you have to be dirt poor. If you have any assets, even a home, you will have to spend them on your medical care before you qualify for Medicaid. Which with the cost of nursing homes etc. will not take you long.
Thank you for explaining, I pray I never have to see myself or anyone in my family having to use Hospice but thankful beyond measure it is available for everyone. I am someone that has always said that if I were ever diagnosed with Cancer I would deny chemotherapy and radiation but want palliative care. I refuse to put chemo/radiation inside of my body and am very thankful Palliative is an option. God Bless you all.
My nephew Josh passed away from cancer. And cancer sucks.. . I wish I would have found your channel when he got sick. It would have helped me tremendously.. I watched your videos all the time now. Thank you Julie for all your info.
My dad has one of the most severe cases of Crohn's Disease in the country according to his doctors. He's had dozens of surgeries to remove sections of intestines and about 15 years ago his gastroenterologist finally made the call to remove his colon entirely. Two years ago he was put on palliative care. Mostly to help manage his pain and medications. He has severe issues with vitamin deficiency so he gets help for that too. Palliative care has really helped his comfort level. My mother described it to me as Palliative care = quality of life care and Hospice care = end of life care.
A very good explanation. As a former Hospice nurse for 6 1/2 years, I found a Lot of people are afraid to get on Hospice because they were afraid its would " cause " them to die. Hospice also is concerned with symptom management , but at end of life. It treats not just the patient but the whole family to help with the emotional aspect of end stage disease. Home care used to care for people in their home that did not need Hospice or palliative care who were home bound. That may have changed.
In New Zealand there are few hospices. Palliative care is end of life care and symptom management. The nurses in Palliative Care are incredible. Healthcare in New Zealand is free so less complicated than there 😊
Thank you for the content you make, I am in nursing school and all of this information is so very valuable for those of us that want to be Hospice and Palliative nurses. Thank you!
Thank you for your very helpful information regarding end of life. I found it very helpful during my husband’s hospice care and what I could experience. He was on hospice about three weeks. I watched your videos during that time. He passed in July, last year. I had wondered about the difference between Palliative and Hospice care. Great info.
My mom fell and hit her head on the asphalt in the garage. Covid just started and we weren’t allowed to go in to the hospital after the ambulance came and got her. She had numerous brain bleeds and the doctor said because of her DNR, she would have palliative care. We had no idea what it was, but they were awesome to her and us. I’ve been watching your videos and want to thank you for it.
My dad was dying from heart disease, and was denied hospice payment from Medicaid, even though his doctors said he had less than 6 weeks to live. We had to pay around $25,000 out of pocket for his hospice care for the last 6 weeks he was alive.
My sister had palliative care and hospice care at Advent Health in Deland, Florida. I have NEVER, in my life, experienced such absolutely caring and wonderful care. The entire staff were wonderful!!! During her stay, I asked the question of the difference between palliative care and hospice care.
You calm my lack of real knowledge. Who can help me when I don't have a terminal ilness but I feel like I am dying. Radical pain, and a combo of various disorders? HN JULIE, I am going to keep asking till you can provide some kind of resource. THANK YOU
We tried to get my dad on palliative care. The doctor even put in a recommendation. It never happened. We were told the palliative care is difficult to get on and the referrals to Hartford home care were just ignored. He has congestive heart failure and stage 4 kidney failure. He has been admitted to the hospital three times in the past year. We have just given up on putting him on palliative care. My fear is that we will run into the same issues when it’s time for hospice care. At this point, I feel his doctors don’t know what to do with him. He keeps filling up with fluid, has infections and ulcers on his legs. He is being failed by his doctors. He does not want anything done to save his life, he is dnr, no dialysis. He fell a year ago and broke his femur.
Thank you Hospice Nurse Julie for such an easy to understand explanation of hospice vs palliative....it has really made it clear to me what to do or consider when my time comes. You are such an angel on earth ❤
Canadian Palliative care nurse here. In my world palliative care is an approach and philosophy of care. It can happen while on active treatment to manage symptom buden. Hospice is a building for end of life care, usually 12 weeks. Health care is covered and home care provides palliative care in the home. We use the surprise question. Would you be surprised if the patient died in the next yesr? Palliative eligible.
Our health system allows self-referral for palliative care. We used palliative care nearly a year and transitioned to hospice (2 month duration). Palliative care had several pluses including a 24/7 number to a nurse with doctor backup, and no negatives.
Hi Julie: I have been following you on IG for probably a year and now on RUclips. I feel saying thank you is not nearly enough but there are no better words to speak and I hope you know my thank you is from my heart to yours! You continue to educate me and even though I know the final days will be emotional I pray that my hubs and I will feel more at peace knowing somewhat what to expect in his final days. Am sure every passing has its own nuisance so we will never know everything that could possibly happen. Some things you talk about are scary but there is power in knowledge. Power enables us to control the forces of nature and use them for the higher good. Bless you, for your ministry, professionalism, and courage to help us understand death to live better and die better. I am blessed to have found you… ♥
When my dad died of Emphysema in 2011, he spent the last two months in the hospital. He spent the last couple of weeks on palliative care. He wasn't able to come for his final days. My mom and I were with him when he died. He had been unconscious the last three days. We talked to him through it all even though he was on a ventilator the whole and couldn't speak. Palliative care was a good experiance for our family.
Hi Julie. First, I love your channel. As a person who has been through this several times with loved ones, I find your advice spot on. The reason I’m commenting on this video is just to say that nothing is “free.” You we’re clear that Hospice is funded by Medicare, but that doesn’t make the service, equipment, or supplies “free.” Medicare is government funded insurance, and while there is no direct out of pocket payment by the patient/family, there is a cost to every American taxpayer.
I’m not sure why you feel called to raise this here, but you are wrong, in several respects. I am 73; I worked for 51 years. That entire time I was paying FICA tax (Federal Insurance Contribution Act). That is payment for insurance that includes social security and Medicare. Those benefits are supposed to be in a ‘lockbox’ but of course Congress has borrowed from it to finance wars. All the sane I paid tax myself for 51 years. In addition, I am charged for my coverage: $170 a month for Part A, $290 a month for my Blue Cross supplement, $109 for my Part D drug plan. You are not paying for my care with your taxes at all. Actually the government currently owes social security about 2.7 trillion for money it as borrowed. It is true that part of the budget goes to SS and Medicare, but it is also true that money continues to come in earmarked for those costs in the form of FICA taxes still being paid. Of course when I was still working, my FICA payments went to your parents. So no, Healthcare isn’t free, but we pay most of it ourselves. You are simply repeating a right-wing falsehood.
@@gingermcintosh6545 , it is covered under the Medicare benefit, diagnosis driven. It is covered 100% by that benefit. There is no co-pay for the supplies, equipment, medications, services that treat the terminal condition ( when previously you had a copay) now you do not , so it is considered free. It is not a right wing propaganda belief. It is a fact. Hospice nurses are very special people who want to serve their patients and make sure their lives are better by receiving the services that yes, your paid for . The dedication to the profession has absolutely nothing to do with politics. If hospice was politically driven by this administration... It would not exist.
Oh, that was really really interesting. Informative and wonderful. Thank you. I am on hospice care at the age of 82 for my cancer that I have had for eight years, but I have never allowed surgery, radiation, or chemotherapy into my life. The pet scan approved the cancer as positively there. And then the wound in the breast burst forth in the form of a dangerous bleedout , but I’ve been tending that wound myself for eight years. Since October I have really improved because I’m on Hospice Level One. You did not address what we have here for Medicare as level one, two, three, or four. I am still very active during the hours that I’m awake. My mind has not gone, so people find it hard to believe that I am on Hospice because of its reputation as you mentioned. Your palliative care information was interesting. I had never heard of that, but I am in a very rural state. (Maine).
I had a 50yo room renter that often went to ER, he had chronic back structure & nerve system from it, so he often fell and EMT'd to ER. Your description of palliative care sounds like his confusion of his care would've helped him survive, but w/o such he passed away from falling more, infecting himself from falls and on life support til he passed. I can only think he hadn't persisted enough with doctors to get right plan, in fact I had noticed such backoffs by him. Thank you for this vid, hope my tale here further gets folks pushing there docs.
Hi This RUclips is very helpful. I'm caring for my 95 yr old mom. I've had to leave my home, husband and family to do this. I do have my husband and families blessing, but this is hard. I've been here a little more than a yr. I'm tired. I'm in a really good support group and I plan to stay with them because they've been a tremendous help. However,
This information is priceless. I have metastatic breast cancer (in remission right now), and I've always just had a VAGUE concept that hospice and palliative care were the same thing - ha! Thanks a million!
An especially helpful explanatory vid with info we all need to know, educated in advance…for self AND as your loved one’s Patient Advocate. Thank you!! ❤ (suggestion: can you help educate all on how helpful and necessary it is to have a Healthcare Proxy and/or Medical Power of Attorney? So much confusion out there. Without it, your hands are tied in trying to help your loved one at critical times. Perhaps host an attorney? States can differ, but a high level overview would help to establish such BEFORE your loved one has an acute or chronic life health issue. TIA! 🤗💙)
WOW! Thank you! I really thought I understood. I was SO wrong! Thank you, thank you, thank you! I would NEVER BURDEN my family with End of Life Care, now that I understand! I will GO to Hospice if needed. Dying at home, is a luxury I can’t afford. I wanted to die with my animals by my side as they have given me the most comfort. This was so very very informative. This is the first truth I have heard. 💗💗💗💗💗
Can a person participate in hospice if they do not have any family? If not, what other options are there for a person that is terminal, has no family to provide care, but wishes to die at home? Or, for that matter, does not have enough money to pay for a long-term care facility?
Thanks so much Nurse Julie! You informed me about something very important. My mother passed away on September 18, 2023. She was on palliative care. During the summer when she was in the hospital I didn’t know the difference. Thanks so much!😊
I decided to watch this video because my mother has been in palliative care for past 2 yrs. She has stage 4 lung cancer with liver mas. They do say her immune therapy won’t cure her but will help her symptoms. I didn’t really understand what was going on so this video is very much appreciated. The dr isn’t very straightforward when it comes to questions but maybe answers my mother might not want.
Also your last few words is actually a book I was directed to read on death and dying it’s actually a mandated read for psychology students. Very helpful when you dealing with a terminally ill family member
From what you're saying about palliative care in the U.S. versus Canada, it sounds quite different. In Canada, end-of-life care often allows the terminally-ill person to enter and live in a palliative care FACILITY where they will stay until they die. Every aspect of the person is looked after. I'd prefer that. Some offer palliative sedation. And because we have MAID (medical assistance in dying) in Canada a dying person can opt for that in a palliative care facility provided it's NOT a faith-based facility. The rules about that MUST change. I love your videos, Julie.
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What other questions do you have? I hope this gives everyone a bit more of an understanding about the differences!
My wife is in a nursing home in WI. She is in what they call 'comfort care' now. It sounds somewhat like palliative care. Thanks for the explanation. I had to sign something saying the nurses would keep her comfortable but not take her to the Emergency Department so it not quite like what you described as palliative care but sounds similar.
How does one not be afraid to die?
My mom is in Hospice Care at home. The nurses are wonderful. The siblings are taking care of my mom and dad 24/7. My question is why isn't there a way to give a dementia patient medicine such as Ativan through a patch on the skin? My mom fights and will not take her medicine. It's been 12 weeks of my siblings spending 70 hours a week there. My dad had a widow-maker situation and he's not strong or allowed to take care of her. These are two people that have been married 65 years and taught all of their children how to love. My dad spends every minute sitting next to my mom and he's there for everything he can do. My sister went and bought a king-size bed thinking that they could use more space. Now, when they peak in the room, you couldn't put a piece of paper between my parents. My dad just whispers loving things to her while she sleeps. I know how it is to take care of an incontinent person because, my husband had been in a coma and I brought him home and I did all of the hospice care. They found out he had cancer when he woke up. I only slept for 3 hours a night for 6 months. I was seeing lots of pretty colors and hallucinating. I don't regret a minute of taking care of him for two-and-a-half years. I know my dad just wants my mom to be at home but, he knows that my siblings are burning out. Back to the question, is there a way to administer her Seroquel at night or Ativan during the day without her feeling like she's being attacked and fighting back? If not, I think they should develop a patch for sedatives so you could just put it on their skin when you're rubbing their back and they wouldn't know. Thank you for taking away the fear around dying. My husband went into the kitchen on his birthday and I went in after him. He was on his knees and I laid him on the floor and I looked into his eyes and I said, I love you. He mouthed, I love... and, he died with my hands on his chest. It was a gift because, I was with him when he took his last breath. I know that everything is going to be okay. 💕 Thank you for what you do and for all of the heart and compassion that you put into it. You deserve a handsome man who loves you. 😊
I've recently followed your channel. I'm from the other side of the globe and all I can say is that nearing death phenomenon are all identical whichever part of the world you're in.
As for "visioning" I had one experience with my dying godmother when it was more than just visioning that she experienced. She even WENT with the ghost out for a romantic dinner, before returning to her body in the deathbed. It was her dead husband who had come to ask her out for a date. She spoke about it after returning to her body. A few days later she passed.
You say that Hospice mostly involves caregiving by a person's family. What is done if the person doesn't have family who can (or are willing to) care for them?
I did palliative care for my 87 year old dad who also lived with us for 11 years, I did feel alone sometimes as my dad went downhill quickly from learning that he had aggressive bladder cancer to his death was 6 weeks.. I did everything for my dad, changed his diapers, sponge bathe him and would lay awake hearing him breathe.. The last day of two he refused his meds, water then food and I couldn’t lift him good and decided to phone hospice and thankfully they had a bed available, I cried tears telling my dad but I did not leave his side for 5 days and nights in hospice, I was a daughter to him during the last few days of his life instead of a caregiver.. I talked, sang listen to music and held his hand .. even though he was unconscious but knew I was there.. The best gift I ever gave him was holding his hand until he saw my mom again after 21 years❤ I miss him so, but so grateful I was there for him
You are an amazing person!
Absolutely amazing. What a blessing you were to both your parents! Hope you are doing well today.
The last sense we lose as we die is hearing. He heard you singing. I’m sure it provided him joy, he just wasn’t able to express it.
I adore this story! You’re a true INSPIRATION for many readers with parents in failing health. Thank you for shearing your heartfelt story!
My mother passed last Friday 5/26. If I hadn't found your channel a few weeks ago and learned what to expect, the various stages leading up to her passing, I would have been more stressed than I was. A great big thank you for educating me on what to expect and why to expect it. It was so helpful at an extremely stressful time. God Bless You Hospice Nurse Julie!
Wishing you peace and the love of family in the coming days...
@@hotfootsue Awww, how kind, thank you so very much.
So sorry for your loss
You may be able to receive grief counseling should you need that for up to a year. Check with your hospice provider. Sincere condolences on your loss. Been there, you will get through it.
@@tracyzabelle Thank you Tracy❤
Long term Healthcare Administrator here: This woman knows what she is talking about. This is very well worded, and very well presented. It can be complicated, but she did a great job explaining it.
Yes. This video should go to the top of RUclips it's such a public service. Doctors avoid discussing these subjects and most of all educating patients on these subjects. They get a couple of lectures on it in medical school and they are back to aggressive diagnosis and treatment. It's just another symptom in our sick American healthcare system.
So what is it called when and RN comes to the house twice a week and the family does the same thing all other days
@@jeffburger2782 I’m guessing Homehealth care?
I am 69, have end stage renal disease. I have chosen not to do dialysis. I was on hospice for a few months last year after a series of kidney infections left me weak & in need of more care than I could give myself. It was nice having a nurse & cna come out weekly to assist with showers & lite housekeeping. I became stronger after clearing the kidney infections and moved to palliative care. A nurse visits me monthly to check in with me & we FaceTime the PA. I appreciate both services and know I will eventually be back on hospice at some point. I am thankful hospice will be there when the time comes. Thank you for educating us on the difference.
In Utah when my mom asked for palliative care for my MS stepfather, the nurse was very rude and threatened on the second visit that if my mom did not do everything she said that she had the power to take him out of the house and put him in a facility that would take my mom's house away to pay for his needs. She had to immediately end the service because if this nurse went through with her threats my mom would be homeless. A lot of corruption in Utah. Not sure if this is often in other States. But my family members in Maine have been treated extremely well. They went above and beyond in their care. so I'm impressed with the state of Maine
I am praying for you I don't know if you know Jesus as your savior and Lord but if you don't please read John 3:16 in the Bible I know Jesus is my Lord and Savior and he is giving me such peace through all the hard times of life
@@carmelahearle957 Was it Mormon corruption?
Me too! Age64
I am a born again Christian.
Hospice Nurse Julie,
I write to you as my mother, 92, Father, 89 have commuted unaided from Texas to Colorado for another summer season. My wife’s Grandmother 95, and her great aunt.,93 lived in MO, and had to be brought to our home because they could no longer care for themselves. Long story short, the Great Aunt went on Hospice immediately, and it was awesome. She passed after a month in our home with the aid of Hospice nurses and caregivers. Her Grandmother while visiting the Fort Worth Zoo on a Wednesday came home and was ready to go. Hospice to the rescue. Visits, medicine, care, appliances. She was gone in a week.
The information you are providing needs to be on a NETWORK TELEVISION SHOW! It’s that critical. I’m only 60, retired, and am sure I have set myself through my chosen lifestyle to find my demise in some unique way. Your explanations are comforting! Thank you! Bob
I am a former Hospice and Home Health Aide. I wish there was a Medicare rule that would allow someone of the age of 90 y/o to be eligible for hospice. They may not have a terminal illness, but I feel at their age, anything can happen at any time! Many times just have that extra hospice care can benefit them tremendously! And the family too!
@hollyhowes8517 well I am glad I had nursing experience my Grand mother owned her home but what ever you get fro the goverment they want you to be indigent ok so I kept her at home and cared for her 24/7 plus a lot of paper work to qualify my aunt same thing they wanted her to use up the equity in her home so no thanks
I am on palliative care to help with my pain control from my cancer and reactions to medications.
My palliative nurse and home visiting nurse feel I should go on hospice.
I live alone and at 76 try to do the best I can to maintain my house.
They say Medicare will not pay for help to stay in my home. I also would have to pay to stay in an assisted living if I went that way.
If I stay on palliative care I need Part D drug plan to help cover all my meds but if I go on hospice I do not need a drug plan as all meds are provided under hospice?
I find it hard to know the best way to spend out my days. At least my home is paid for.
@@gvet47 May the Lord bless & keep you safe & your mind well. My Mom came to live with me when my Pop went home to Jesus in June. She has several issues & dementia. She just turned 77 & after 60 yrs of marriage, she was just going fast. I promised Pop, she's coming home to live with us. While I know the past several months has been a rollercoaster ride of emotions. Yes, selling (hope) the home. But she too is on Hospice Care & it's been a blessing. Was also for Pop. That the family was by his side, he was able to stay home.
So, to answer your question, NO Medicare will not "pay" for you to have in home nurse staff. That is big dollars & places as Visiting Angels. They come in do housework, cook, clean, wash. I had a great experience when I cared for my best girlfriend's dad. We had a month wait to get him into an Assisted Living Facility. He was late stage Parkinsons & having seizures.
Now if you are in Hospice Care now, you should qualify to get into one of the facilities they use. But you will be in a room with another woman or man. No co-ed dorms. Shared. So, you do not get the "full" apartment type rooming/home as in Assisted Living. That is the only downfall. No absolute privacy.
Yes, you need to keep your Part D. Mainly if you're on any heart/thyroid, diabetes, so on meds. Those they will send to the pharmacy of your choice. But the pain meds they do cover in Hospice. Now, the downside is that they can only fill these pain meds for 2 weeks at a time.
They do have cna's that can come out a few times a week to assist with bathing. Praying for you.
I know a 100 year old woman who still lives independently and doesn't even require readers! No reading glasses, it is insane. She is healthy, no meds, bright, alert, engaged, and independent. Everyone is different, thankfully.
No, no, no. There are so many people aged 90+ that you cannot possibly have them all getting care based solely on their age. They must first have a grave illness. My grandmother and 2 of her children died in their 90s, without illnesses, their own beds. That's the way it should be.
.
When my dad died - and this was 30 yrs ago - from pancreatic cancer my mom was a nurse so was able to do a lot of things such as bath him that they would have done and I specifically remember coming over one time and I had recently gotten married but lived very close so I was there a lot but I remember specifically coming over and they were vacuuming. It wasn’t like our house was dirty but I think they wanted to do something for us but there wasn’t really anything to do. They were wonderful. I will never forget my dads nurse. She cried when my dad passed away. You guys are very special people!!!❤️
My husband had a home nurse for about 6 months to take care of his picc and draw blood every week. He had his picc out in February, and they still contact each other about twice a month. His nurse had a first baby while we were working on our home, they exchange photos and they know if one needs the other, they’ll be there.
Shout out to the home nurses, you’d make more money in the hospital, but you care for people in their home, accept unneeded supplies as care changes and donate them to people without insurance and homeless shelters.
Y’all the real folk. Love you and appreciate you.
My father died at home on hospice care and my husband was on palliative care at home and transitioned to hospice care in a nursing home just before he passed away, so I got to be familiar with the differences. Thank you for such a clear explanation of the two. That is exactly the distinction I saw played out.
Just a quick note: that “have six months to live thing” is just a guideline. It is guided by a phrase something like “in the physician’s best estimate based on the disease process”. I had patients on for less than 24 hours. And some that made it to 2 yrs.
Our hospice really liked to have the patient come on sooner rather than later. It gives the hospice a chance to really get to know the patient and family better. It allows us to help everyone understand and plan for what is happening.
Great explanation of the difference of Hospice vs Palliative care! My mom had Alzheimer and on this past summer my mom became very aggressive/agitated that it became imposible to help her with baths neither my sister, I and nurses aides who was requested by mom’s doctor was able to help. This desease was new to us, so we didn’t know we could reach out to Hospice. We even changed doctors because they were not helping with medication to see if that would help calm her down. My parent’s health insurance rep. was the one who got us in touch with hospice. Once hospice took over she was not aggressive or agitated due to heavy medication. She was already in the last stage, so she had lost a lot of weight. Hospice staff was awesome. They were all so kind and attentive to my mom’s needs. After two months of Hospice coming in my mom passed away on October of this year. She died peacefully with no complications. She just stopped eating or drinking for 10 days which this the last thing they stop doing because they have forgotten how to swallow. I would recommend Hospice to any one who wants their love one to be taken care in their home. Mom never left her house. My dad was great taking care of her when my sister and I couldn’t be there with them. He wanted her to be in their home and with hospice we were able to grant his wish and our. Nursing home was never an option.
I’ve had palliative care since Oct 2022 it’s been a blessing having them! The doctor makes home visits and FaceTime visits! Palliative care has been amazing for pain management and anxiety for me to have a quality of life as I was diagnosed with stage II Cholangiocarcinoma. We talk about when transitioning to hospice when that time comes.
Hi
Stage 4 metastatic breast cancer here, I had Stage 3 in 2019.. still doing treatment, I wish there was a cure, I'll pray for you..❤
My mom has stage 4 bone cancer radiation has helped with the pain but hasn't shrank the tumor but hasn't gotten bigger. She going have a nurse help her in home she starts chemo next week but what upsets me is that they're going to give her a non pill version first which the pill version I heard it is a lot better. I just want my mom to have an extra 5 years. Her pain has been up and down just pray for my mom please
Life is terminal. My dad is 94, and from watching you I have learned that he is in his end-stage. He's been healthy for most of his life. He doesn't qualify for hospice. But thank God you've explained what's going to happen and I can see it coming. You have made this process so much easier for me. Thank you so much. CL
Well what signs did you see?
Why wasn’t he qualified for hospice?
I have copd and emphysema worked the last 28 years in nursing homes in the maintenance department and I have learned more in the last 16 minutes last 20
years. Always great respect for the nurses.
Thank you for sharing. 🙏
Children are different. Thankfully. I’m a pediatric hospice nurse and they can take advantage of concurrent care. This means that they get all the benefit of hospice while they are still able to pursue disease directed care. It’s made a huge difference for kiddos and their families to be able to build that relationship. Some kiddos are in palliative care/hospice for years. It’s a beautiful thing….hospice care 😊
Hospis was so kind to my MIL before she passed 2months ago.They came and spent time,had meds for her, bathed her, gave her love.Taught me how to help her
I am in a chronic pain group on Facebook, a couple of them actually. I’ve heard palliative care talked about in those groups. They talk about it because we always wonder if those of us in unrelenting chronic pain would get medicated the way we actually need to be, if in fact we could be on palliative care. Chronic pain patients currently and for the past few years, have not been treated properly for pain, because of the opioid overdose crisis. The powers at be somehow for some reason, thought that the chronic pain patients were the reason for all the overdoses in the United States. We were not the reason for them. Period.
Nan is correct. Chronic pain patients have been treated horribly and denied pain relief via opiod analgesics since 2016 when the CDC guidelines for opiod perscribing written by anti opiod zealots PROP who have ties to addiction clinics and made money from the government money grab suing the pharmaceutical companies. We , along with doctors are being falsely accused of the reason for the addiction problem which was Never over perscribing but Fentanyl and Heroin thats flooding our country. Even the DEA knows that the war on drugs can not be won . Its the lack of hope , no jobs , housing etc that is the real cause of addiction. Most chronic pain patients can not get even basic help let alone a doctor to care for them . If abandoned by their doctor its almost impossible to get another doctor to take them as a patient who needs opiods. Our dea is persecuting doctors for perscribing saying they are perscribing outside the usual manner despite No guidelines for perscribing. Its time to get the government out of medical care and the DEA to stand down until Congress can start investigating them . Don't expect your pain to be treated in a compassionate manner anymore. Amputations and mastectomies are given Tylenol now and the suffering is unbelievable. All over the country this is happening. Even children with terminal illnesses are being denied opiods because their doctors are terrified of the government and the DEA witch hunt. God help us all
They can't get it through their heads that the reason for the crisis is people taking them illegally to get high,NOT people -especially older-who legitimately need it for pain,causing millions to suffer needlessly.We went through this in the 1980s and 90s until finally the giving of medical pain relief was alliwed,only for them to crack down again.
People with severe chronic pain in the past were prescribed opioids because we had already tried everything else. In my case, it was eleven long years of trying everything under the sun. Opioids were the only thing that helped. I was far from pain free, but they took enough of the edge off that I could function again. Tragically, because of changes in regulations, doctors won't prescribe opioids for those who need them most. Statistically speaking, people with chronic pain, especially seniors, do NOT abuse meds. But now we are the collateral damage of the "opioid crisis." The real crisis is leaving those in severe pain who never abused meds to suffer in excruciating pain. Sadly, many have taken their own lives and turned to street drugs since doctors can/will no longer help them. This is a huge crisis effecting so many people. (Julie, you are absolutely wonderful! I have learned so much from your posts. Thank you for all that you do.)
Well said ✊
I fell off a roof and landed in a sitting position on a blacktop drive. Had back and neck surgeries plus 63 epidural spinal injections, four quadrants of the nerves burned, nothing helped I was still in chronic pain.
Went to pain management was taking 4-6 Vicodin per day as prescribed which helped me to function. Tried other meds, they didn't work. I NEVER once did I abuse my prescription!!!
When first lady Michelle Obama got into the White House, my life changed as well as everyone in the U.S.A. who suffered with severe chronic pain. My pain management doctor told me the federal government (Michelle) is cracking down on opioids and I have to cut you off! Has any of you EVER read about someone dying from Vicodin??Now people are dying from fentanyl, I'm sure our open boarders have nothing to do with it!! Liberals have destroyed this once great Nation!!! I pray God will make us all whole again with no pain. 🙏
Julie, thank you for all of your teaching about end of life. As a palliative care nurse, besides educating about symptom management, I think its also important to talk about the other "pillars" of palliative care. That is, continued goals of care conversations and advance care planning (code status). Many are not aware of the components of resuscitation. If your heart stops or you stop breathing and you are a full code (desire full resuscitation), medical personnel will press on your chest (perform chest compressions, often inadvertently breaking ribs), shock your heart, and put a breathing tube down your throat. If you have a terminal diagnosis, these things won't help you, may prolong life, but also suffering. Whereas a do not resuscitate or dnr is when medical personnel do not do those things with a focus on comfort instead.These are important things to talk about. Most people on hospice are a dnr as comfort is the goal of care. Palliative care strives to educate about disease states, explaining what to expect as a disease progresses so that people can be as educated as possible so that they can make the best decisions that they feel are right for them. So, although palliative care is focused on any symptom management (pain, anxiety, even constipation as many chronically ill people are on pain meds that can cause constipation), palliative care is so much more. When someone may be hospice appropriate but not emotionally ready for hospice, palliative care is a good option.
My mom had a meeting with the palliative care in feb & it was basically a waste of time - they did nothing & said let’s just see what the drs say & work with them. My uncle asked about hospice but they told us we really didn’t need it due to her issues. She went into the hospital on 1/12 & passed away in ICU on 3/4. Hugs to anyone going through this or who have lost loved ones. ❤❤❤❤❤❤
Hi
How are you doing?
Sounds like you weren't getting the help you needed....
This is excellent! As a former Hospice and palliative care nurse I appreciate how you explained this in your video. Thank you, Well done! 😊
My sister & I took care of my Dad on Hospice and we loved the care they gave not only to my Dad, but to us! When my Mom was diagnosed with Stage 4 small cell kung cancer, we again bought in Hospice, although we had to go with a different agency due to staffing. Again, such wonderful care! My Irish Twin brother is now in Hospice House because, due to his dementia, we couldn't care for him at home. I never let a chance go by without singing the praises of Hospice. People think Hospice is where you go to die! After my experiences, I say it's where you go to live! You can be safe & comfortable with much less anxiety! ! No visiting hours, overhead lights on when you're sleeping, nobody waking you up to take vitals, etc! You can be with your family & friends, and have those moments that they will carry with them long after you're gone!
Kathy!!!! Thank youuuuu so much!!! Exactly!!! Thank you for being here and supporting - I'm going LIVE tonight at 6pm (pst)- just fyi
My husband was on hospice and it was awful for him and for me. Having said that, I would welcome hospice if I or my family needed it. I.m in a different state now and hopefully will be much better.
@margaretberling2101 I'm so sorry you had an awful experience! That can be traumatizing! 🫂
This is so important because it prepares each of us for the day we have to make the inevitable decision. We have to be REAL about this and stop pussyfooting. Fear is not an option, preparedness is. ❤Thank you so much for sharing your experience. ❤
Hi. I’m really glad that you said that what you say only applies in America. I’m in the U.K. and the hospice movement is quite different. Hospice is a charity that runs facilities and has home hospice . Hospice is available for anyone who has a life limiting disease. It offers rest bite for families with children or adults with life limiting disease. Our hospice sounds like an amalgamation of both the us hospice and the us palliative care. I’ve had terrific experience with the U.K. hospice movement xxxxx
Nurse Julie thank you so much. My husband has Parkinson's and is currently in the hospital. He's in his latest stage. I was looking into placing him in a nursing rehab home but my heart cannot do it. I just found an agency that offers hospice care. He will be coming home to hospice care. You explained it so well. I hope that hospice can offer comfort and peace to my husband as we navigate this rough season in our lives.
Thank you Julie for explaining Palliative care. My daughters oncologist suggested Palliative care for her. She had Chemo, missed most of her radiation treatments. 2 tumors have shrunk. They has surgery in mind but postponed that for awhile and to be checked in two months to see if cancer has metastasized. I was kept in the dark about my daughters treatments and I'm somewhat confused about her diagnosis. Palliative care seems like a good program. I'm still afraid what my daughters future looks like. I like your channel and how candid you are. Thank you again!!
I lost a daughter to cancer at age 33, five years later and another daughter just finished her journey and survived. But during this, Dr. Annette Bozworth (internal Dr) has a RUclips channel talked about how she cured her life threatening cancer without chemo, and radiation, etc. She also has a book about it and how she did it. It seems we can cure most or all cancers, diabetes, dementia, fibromyalgia, etc. It's worth a try to watch her videos as well. To everyone who suffers lots of pain , cancer etc. I know there is a solution without meds.
Many thanks you are truly a sweetheart for taking the time to explain &educate those who maybe are going through tough times .
5 years ago my husband was diagnosed with Stage 4 cancer from Agent Orange exposure. The VA automatically set him up with Palliative Care. They saw him everytime he had a treatment, ordering all his meds. It was a 2 to 3 hour visit because everyone came in to see him. Pharmacy, Nutrition, Physical Therapy to assess him for equipment to take home and Social Work. He has been in remission for 3 years now so now he see them every 3 months. So the VA automatically set up their vets with any long term illness with PC.
Especially if it is service related like Agent Orange.
It’s called the Pact Act. Dad diagnosed with Parkinson’s Dementia from Agent Orange during Vietnam service. Trouble is I moved him from a different state where I have to get VA benefits transferred. This seems to be time consuming to set up a new PCP.
It’s called the Pact Act. Dad diagnosed with Parkinson’s Dementia from Agent Orange during Vietnam service. Trouble is I moved him from a different state where I have to get VA benefits transferred. This seems to be time consuming to set up a new PCP.
Julie, first, thank you for your expertise and ability to teach us how to be good consumers of end of life and better life care. My 91 year old father (with moderate dementia and related sleep deprivation) will soon be leaving skilled care and entering long term care following a bout of COVID pneumonia. While in the hospital, Palliative Care helpfully reached out for a discussion regarding DNR status. They explained that their service would ease Dad’s transition into LTC. Thanks to you, now I understand how they can help. They won’t be able to alter his severe short term memory loss and poor judgement, but hopefully they can manage his insomnia!
I learn so much from your videos--Thank You! You explain things in a manner that can be understood by people not in the medical field. Thank you again.
Thank you for the explanations. I had a bad experience with Hospice for my Mom in ‘16. They did not work on weekends and had a phone line to a receptionist, not a nurse, 60 miles away. She died on a Sunday.
At this time my husband has multiple myeloma with kidney failure. He has been resuscitated twice. Palliative care has been recommended to us. I knew it was not Hospice but asked if it was support. Yes was part of the answer. I will pursue PC as maybe it will make his life easier. And, I must mention the stress it has put on me. Thank you again; I needed this info. Linda in VA.
Trust me. This is 100% true. My mum spent her last 3 months on a UK oncology ward over Christmas. My big sisters too charge, I couldn’t deal with it. On the day she died my sisters begged them not to put her in the metal coffin/transfer thing. You see we had stayed 24/7 (in shifts) so knew the routine. Curtains all shut, squeaky wheel trolly in then out and curtains opened to see it empty but being remade. The staff could see my sisters and dads reaction so they put an oxygen mask over mums face and then transferred her to the mortuary through the hospital with family alongside. People not knowing that was a deceased person. Complete compassion. On the day of mums funeral the first to come and hug me was a nursing assistant from mums ward. My mum was 62. Amazing people. My Dad, 63, was diagnosed with stomach cancer 6 weeks later and died in a hospice 5 months later. I was there for that. So peaceful. So calm. A good death is real people.
Thank you for making people aware that most hospice care is in the home and there needs to be a main home caregiver. We teach our clients and family how to manage a terminal condition, keeping the client comfortable. Palliative care is symptom management also. The difference is curative therapies can be pursued w palliative care.
Grandma is 90 years old, but not considered terminal!!!!!!. What!??? Grandma's been beating the odds as it stands.
Thank you so much for your channel. Just began working at a facility which has a lot of end-of-life clients. Your videos have helped me deal with seeing and interacting with individuals who are at end of life. I have also had to deal with many end of life situations with quite a number of pets of mine, so end of life doesn't seem so scary to me. I also have very strong religious beliefs which help me through times of passing. But I just wanted to let you know, your videos are very helpful and informative. Keep going.
Thanks for the most valuable information regarding these two programs. I'm the caregiver for my brother who has end stage COPD, chronic respiratory failure, CHF, and a few other conditions. We're searching out information on both of these programs and this video has been most helpful in explaining the differences. We've gotten some misinformation regarding hospice which has resulted in a lot of unnecessary suffering and fear. Thanks so much for what you're doing, it's very much needed!
I sure wish I’d had learned this before my dad died of ALS 8 years ago. Thank you so much for explaining this as my sister is now going through stage 4 cancer and it helps to understand the difference.
Julie.... you give such helpful and good information. Thank you for your help and wonderful service. You are a delight!!
I wish I had found your videos before my mom passed. I didn't realize that she was declining in health as fast as she was. She was in a nursing home and of sound mind so maybe the staff and her were having discussions. It was her way to keep things from us. I saw her on Thursday she seemed okay, made plans to have dinner on Sunday....then the nursing home had a round of Covid and no visitors. I called Sunday, just as the nurse was talking to the staff Dr. We were able to arrange for compassionate visit and she passed later Sunday night. I just wish we had a chance to call in Hospice.
My mother was put into hospice, and they treated her and the family with such care and love. I thank God for facilities like Hospice.
Thank you Julie. You are a blessing. I love your program ❤
Outstanding talk. Had my Mom on Hospice a few years ago. While it was a sad choice, it was a good one. She was happy to be home and done with the hospital.
Thank you for clarifying the difference between the two options. I am in Canada so coverage may be different, but the situations are the same. I lost my brother to cancer approx. 2 years ago (he was single), and at the time of his illness, we had a Home Care nurse come to our house as he was recovering after surgery here. After my brother's surgery, it was the Home Care Nurse who introduced the word "palliative care", which was a shock at the time. I really relate to everything you are saying here. I was the main care giver for my brother as we were very close and I was happy to do so, but as time went on, he needed more care and he preferred to return home to his apartment. He wanted some independence during his chemo treatment but he was unwilling to work with some of the support workers who came to his home. It was difficult, but he/we managed for a while. In hindsight, I am happy that we helped him stay in his apt as long as possible, as that is what he wanted, but he eventually passed away in hospital within the year. I think when you are in the "thick of it" caring for your loved one it can be hard to see the forest for the trees. You just want them to have the best care they can get, but when that person is in denial and fighting for their life, you have to support them. My brother did not want to hear about end of life, and he stuck with that until he couldn't any more. Caregivers go through a lot and I thank God for the support of the end of life people who came to us and provided all their help. They are truly angels. Your video has helped clear up some of the confusion of what I felt we went through between Hospice/vs Palliative care and want to thank you for that. Your videos are really helpful, as grieving takes time and every situation is different.
Hi Julie, I recently found your channel and I thank you so much for the videos and information that you give, it has already given me so much help and helped to reduce some of my fears.
In short, I am 62 years old with severe COPD, CHF, and now a recent diagnosis of Stage 4 lung cancer as well as many other issues I suffer with for many years. I have been declining quite quickly now. I know that my time is limited and I plan on watching your videos with my children this weekend so we can discuss more about my care and they can also see what to expect at my end. Yes I am scared to death of dieing, I had assumed I would die a slow painful death gasping for my last breath, Thankfully I have understood from your videos that those symptoms will be confronted to make the process easier, that has helped me so much and I can't thank you enough for what you have produced and shown, it really gives great comfort, my words can not express how much. Sorry for rambling on so much, I'll get to my question.
I am really confused on where I would like to pass on, Whether at home or in the hospital? Could you please share some insight of your personal opinion and thoughts on this please?
Thank you again so much Julie.
Julie, Thank You ! Finally someone has simplified my questions .During my mom's care the visits to the Dr 's office were many but not one nurse or Dr mentioned palliative care. I accidentally came across palliative care but it came a little too late . I appreciate the information you have provided and again, Thank You ! ❤
With a daughter in law with Brain cancer I’m glad I found this, I’m up there in years so it’s also good for me to know all this for myself and hubby. My mom died, just never woke up one morning, nice way to go. Dad had a month of hospitalization and died. Never had to deal with this, but palliative care was a new word for me with dad.
What a great nurse, easy explanations. 😊
I wish someone had explained hospice to me clearly when my mom was at end-of-life. Despite asking all the questions I knew to ask, I did not understand that most everything would fall to myself and my siblings. It was overwhelming, and I certainly would have made different decisions for Mom and for ourselves had I known.
Thanks for sharing this valuable information with us.
I think Doctors and nurses can push this without much knowledge of the program .
Hey thanks for this helpful video! As you accurately said, the focus of a palliative team varies a lot depending on the team and the needs of the particular patient. I like to describe palliative care as an extra layer of support to make sure the medical team stays focused on what matters most to the patient (since symptom management needs alone may not be an issue). Keep up the great content 🙌🏻
I found out to late about palliative care for my husband that was diagnosed with lung cancer. When the nurse came to our home to evaluate my husband, she recommended hospice. He was brought t o hospice on a Monday and passed on Thursday.
Palliative Care would have helped my husband and myself significantly.
I’m a geriatric nurse and I just learned so much from you. I work in LTC and we usually have at least one or moreHospice patients. At least 1/4 of them eventually are denied Hospice after a few months. Palliative care seems to fit those quarter but I have never had a resident on Palliative care. Thank you I would love to learn more.
My grandfather had glioblastoma, and started on hospice, then went to palliative care, and was about to go back on hospice when he passed as he had the cancer for years. But my grandmother on the other side of the family had glioblastoma and was only on hospice as she showed very little symptoms until end of life.
How did your grandfather have this for years when this type of cancer is a very fast growing tumor and very short life expectancy im confused
@@kimtillman5683 I'm not sure. It might've been a different type but that's what he was diagnosed with, and what is on his death certificate.
I so wish I had found your channel a few years ago prior to my mom dying during COVID. You are amazing & so very informative. I am currently in the process of becoming a death doula and I have relied on your channel greatly to learn as much as I possibly can. I have been around probably at least a dozen people who have passed, & I personally find it an incredible spiritual experience. I feel so drawn to want to be with people during the process of dying. Thank you so much for all that you do! Sending you love & light ❤✨
my sister had both palliative and hospice as she progressed. We found both to be very helpful. We just loved the people so much.
I'm on hospice since June 12, 2023 .
I am now getting ready to go to palliative care due to the change I'm getting ready to make, I'm starting Sir Shere Y 90 Radium treatment on my liver. I was given 6 months to survive in June but with this treatment it should give me a longer time or quality of life and even though not a cure its should help to kill some of the tumor that has taken over my liver and arteries I pray 🙏🏼. This should be 3 months to know what it has done and pray it gives me kore life time. Hospice has been great for me. I'm confident with palliative care will be helpful. So I'm thankful and ok with the switch in care if need be I can get back on hospice if my life expectancy does not give me much time.
Fight for your life and hospice and palliative care are where we need to be with a terminal illness. God bless everyone. We will get through the battle hospice or palliative. Amen
I think what I as an elder hate the most about our medical system is the lack one one doctor who knows you handles your care. I have so many specialists and they don’t agree and I go the hospital to only see the specialists partners and then, the hospitalist is there in the hospital but he doesn’t know you, but they start or stops some treatment …and the next day a new hospitalist shows up. For elderly patients this all the more exasperating because they have to repeat their health story. It’s overwhelming. And I am so sick of being asked what day it is! I wish it were 1975 and my GP was in charge. Knew me and the entire family and aunts cousins and grandparents.
I figured that the hospitalist is there mainly to sign orders. I've had similar experiences .
The hospitalist there to get you out as soon as possible to save them money.
My 101 year old friend with kidney stones and congestive heart failure and diabetes with great sensitivity to most drugs has had this hospital and doctor/specialist frustration over this past year. Very frustrating especially as she is still very mentally sharp and on top of her conditions. Often the doctors or nurses don't listen to her because of her age and don't pay attention to the fact she is lucid and sharp.
❤Well said!
I so totally agree with you! Your already scared, confused and not feeling well and all that explaining again 😢! To much, I sometimes just shut down or blow up 😔 sorry for you to ❤
In recent weeks, I was railroaded into Home Hospice Care, skipping Palliative Care completely. Original cancer diagnosis was about a year too late. One radical surgery - a waste of time. Oncology made me sick with few positive results. Doc who made the original mis diagnosis wanted to remove and reconstruct the remaining healthy ear - nope. Hostile neighbors can't believe I'm not dead yet.
The good news is I've noticeably improved with oxygen and additional meds. Nurses coming in twice a week are a god send. Sleep better although I 'm not getting wind in my sails until mid afternoon at the earliest. Unable to sleep in my bed - sleep well in my rocker recliner. My appetite has improved although my equilibrium is taking a beating. My elderly sister, who is a CNA, is driving 625 miles today to spend some time with me - her visit will be priceless. My daughter and her family are only able to visit once per month, for which I'm also grateful. I have no idea how much time I have left but I want to make the best of it.
I'm determined to live out my life in my long paid for and recently renovated retirement home.
My elderly mother who was dying (they said she had weeks to live) got "kicked out' of hospice because her condition had "stabilised". They transferred her to a different outside care facility.This is NZ and Medicare doesn't play a role. I don't understand it even now. I felt really upset because it felt truly awful. She went from a lovely place to a dull facility that was no comparison.😪
❤so sorry this happened to you. You did your best. Your mom knows you did.❤
Well but what happened to her after that transfer? Was she bothered by it?
My mother went to a hospice facility for her final week of life. Her internal defibrillator went off during dialysis n she was told that would happen at every treatment. We all felt, herself included, she would be able to be kept more comfortable at the facility. Thankfully the staff treated her with so much respect.
When my father in law had to make the decision between Hospice and Palliative this is how his Dr explained it to him and his family. He asked the patient, "do you prefer "Quality" or "Quantity" of life? He went on to explain the difference. He said, "hospice will do all they can to keep the patient as comfortable until end of life. Pallative will care for and give the patient the best care they possibly can in order to extend their days of life here on earth until end of life. My father in law chose hospice because he knew and felt he was at the end of his life and wanted the best care (quality. So sometimes the patient just knows which they prefer. If the patient is able to choose, they should be the ones to say. ❤
💜🐷💜 Another good benefit under hospice is respite care and continuous care when needed.
My husband died of exposure to Agent Orange.
He was in the VA hospital
Rex B. Robot VA hospital.
Hosprus, not Hospice. I don't know if there is a difference.
Where right there with us. They were fantastic.
They gave Me a paper and it told Me how he was dying.
That was a blessing.
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I love your channel. I appreciate that you use this platform to demystify the details of end of life decisions in a clear way for anyone to understand. I am not afraid of death but I know many people are. Postponing this learning process makes us ignorant and ultimately puts the burden on people "we love." Every video is relevant. Thanks a million for what you do. ❤
My husband was put on palliative care, he didn't live long enough to be put on hospice 💔😢...it was stage 4 metastatic breast cancer
My husband was put on palliative care, and then about a week 1/2 later put on hospice he died a little less than two months after he was put on it from brain cancer meningioma and edema
The draw back to hospice is that the family provides the care. If there is a small family it can be very taxing on the family. I took care of my husband for years and by the “end of life” I was totally wore out and needed relief.
I'm confused.If the family does everything,and you can't get medical care in hospice besides.how is that any different than keeping your loved one at home?
My husband is on hospice he is getting a bed, table plus he got a walker and wheelchair were even getting sheets and a blanket all his meds are taken care and even his cremation will be taken care of he is a vet so VA pays for some stuff he has less than 3 months we also have oxygen tank and a machine that helps him breathe I can get a person come in once a week to clean my house which I declined my last husband was on hospice and the hospice in CA and now in MO are basically the same and all the staff in both places were phenomenal great ppl very caring and very professional I'm so thankful this is available I've learned more things from your videos thank you
I see your You Tube reward in the background. Incidentally, I know this is off the subject, my Mom passed away 4 years ago, and I saw her do the death rally, but I didn't know what was happening until I found your channel. I'm glad I have found your channel.
my dad was in hospice for about a month. hubby was on palliative care for less than one hour.
Thank you. This is a great presentation! One note for your viewers who are not on Medicare but have been told they have a terminal illness. Though it varies state by state, Medicaid does have a hospice program as well. I work in the poorest state in the United States and we get many patients who have Medicaid as the payor source. Usually these patients have longstanding chronic medical conditions and lack of access to adequate medical care. At some point they end up in a hospital and referred to our agency.
To qualify for Medicaid, you have to be dirt poor. If you have any assets, even a home, you will have to spend them on your medical care before you qualify for Medicaid. Which with the cost of nursing homes etc. will not take you long.
A Great Service to those in need. Sometimes hard to hear initially but once you process the information you provide……it’s invaluable. Thank you.
Thank you for explaining, I pray I never have to see myself or anyone in my family having to use Hospice but thankful beyond measure it is available for everyone.
I am someone that has always said that if I were ever diagnosed with Cancer I would deny chemotherapy and radiation but want palliative care. I refuse to put chemo/radiation inside of my body and am very thankful Palliative is an option.
God Bless you all.
My nephew Josh passed away from cancer. And cancer sucks.. . I wish I would have found your channel when he got sick. It would have helped me tremendously.. I watched your videos all the time now. Thank you Julie for all your info.
My dad has one of the most severe cases of Crohn's Disease in the country according to his doctors. He's had dozens of surgeries to remove sections of intestines and about 15 years ago his gastroenterologist finally made the call to remove his colon entirely. Two years ago he was put on palliative care. Mostly to help manage his pain and medications. He has severe issues with vitamin deficiency so he gets help for that too. Palliative care has really helped his comfort level. My mother described it to me as Palliative care = quality of life care and Hospice care = end of life care.
A very good explanation. As a former Hospice nurse for 6 1/2 years, I found a Lot of people are afraid to get on Hospice because they were afraid its would " cause " them to die. Hospice also is concerned with symptom management , but at end of life. It treats not just the patient but the whole family to help with the emotional aspect of end stage disease. Home care used to care for people in their home that did not need Hospice or palliative care who were home bound. That may have changed.
In New Zealand there are few hospices. Palliative care is end of life care and symptom management. The nurses in Palliative Care are incredible. Healthcare in New Zealand is free so less complicated than there 😊
I was a long term care aide and we had hospice in the facility
Thank you for the content you make, I am in nursing school and all of this information is so very valuable for those of us that want to be Hospice and Palliative nurses. Thank you!
Thank you for your very helpful information regarding end of life. I found it very helpful during my husband’s hospice care and what I could experience. He was on hospice about three weeks. I watched your videos during that time. He passed in July, last year. I had wondered about the difference between Palliative and Hospice care. Great info.
My mom fell and hit her head on the asphalt in the garage. Covid just started and we weren’t allowed to go in to the hospital after the ambulance came and got her. She had numerous brain bleeds and the doctor said because of her DNR, she would have palliative care. We had no idea what it was, but they were awesome to her and us. I’ve been watching your videos and want to thank you for it.
My dad was dying from heart disease, and was denied hospice payment from Medicaid, even though his doctors said he had less than 6 weeks to live. We had to pay around $25,000 out of pocket for his hospice care for the last 6 weeks he was alive.
I’m so sorry you and your family had to go through that. Our healthcare system in the US is so broken.
My sister had palliative care and hospice care at Advent Health in Deland, Florida. I have NEVER, in my life, experienced such absolutely caring and wonderful care. The entire staff were wonderful!!! During her stay, I asked the question of the difference between palliative care and hospice care.
You calm my lack of real knowledge. Who can help me when I don't have a terminal ilness but I feel like I am dying. Radical pain, and a combo of various disorders?
HN JULIE, I am going to keep asking till you can provide some kind of resource. THANK YOU
We tried to get my dad on palliative care. The doctor even put in a recommendation. It never happened. We were told the palliative care is difficult to get on and the referrals to Hartford home care were just ignored. He has congestive heart failure and stage 4 kidney failure. He has been admitted to the hospital three times in the past year. We have just given up on putting him on palliative care. My fear is that we will run into the same issues when it’s time for hospice care. At this point, I feel his doctors don’t know what to do with him. He keeps filling up with fluid, has infections and ulcers on his legs. He is being failed by his doctors. He does not want anything done to save his life, he is dnr, no dialysis. He fell a year ago and broke his femur.
Hospice care was amazing for my dad in 1996 and my mom in 2017. God bless all of you for your compassion❤
Thank you Hospice Nurse Julie for such an easy to understand explanation of hospice vs palliative....it has really made it clear to me what to do or consider when my time comes. You are such an angel on earth ❤
Canadian Palliative care nurse here. In my world palliative care is an approach and philosophy of care. It can happen while on active treatment to manage symptom buden.
Hospice is a building for end of life care, usually 12 weeks.
Health care is covered and home care provides palliative care in the home.
We use the surprise question. Would you be surprised if the patient died in the next yesr? Palliative eligible.
Our health system allows self-referral for palliative care. We used palliative care nearly a year and transitioned to hospice (2 month duration). Palliative care had several pluses including a 24/7 number to a nurse with doctor backup, and no negatives.
Hi Julie: I have been following you on IG for probably a year and now on RUclips. I feel saying thank you is not nearly enough but there are no better words to speak and I hope you know my thank you is from my heart to yours! You continue to educate me and even though I know the final days will be emotional I pray that my hubs and I will feel more at peace knowing somewhat what to expect in his final days. Am sure every passing has its own nuisance so we will never know everything that could possibly happen. Some things you talk about are scary but there is power in knowledge. Power enables us to control the forces of nature and use them for the higher good. Bless you, for your ministry, professionalism, and courage to help us understand death to live better and die better. I am blessed to have found you… ♥
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What a great nurse! Julie you give such helpful and good information...thank you Julie from Fresno, CA. You are a blessing. ❤
When my dad died of Emphysema in 2011, he spent the last two months in the hospital. He spent the last couple of weeks on palliative care. He wasn't able to come for his final days. My mom and I were with him when he died. He had been unconscious the last three days. We talked to him through it all even though he was on a ventilator the whole and couldn't speak. Palliative care was a good experiance for our family.
Hi Julie. First, I love your channel. As a person who has been through this several times with loved ones, I find your advice spot on. The reason I’m commenting on this video is just to say that nothing is “free.” You we’re clear that Hospice is funded by Medicare, but that doesn’t make the service, equipment, or supplies “free.” Medicare is government funded insurance, and while there is no direct out of pocket payment by the patient/family, there is a cost to every American taxpayer.
I’m not sure why you feel called to raise this here, but you are wrong, in several respects. I am 73; I worked for 51 years. That entire time I was paying FICA tax (Federal Insurance Contribution Act). That is payment for insurance that includes social security and Medicare. Those benefits are supposed to be in a ‘lockbox’ but of course Congress has borrowed from it to finance wars. All the sane I paid tax myself for 51 years. In addition, I am charged for my coverage: $170 a month for Part A, $290 a month for my Blue Cross supplement, $109 for my Part D drug plan. You are not paying for my care with your taxes at all. Actually the government currently owes social security about 2.7 trillion for money it as borrowed. It is true that part of the budget goes to SS and Medicare, but it is also true that money continues to come in earmarked for those costs in the form of FICA taxes still being paid. Of course when I was still working, my FICA payments went to your parents.
So no, Healthcare isn’t free, but we pay most of it ourselves. You are simply repeating a right-wing falsehood.
AMEN. 👍🏼
@@gingermcintosh6545 , it is covered under the Medicare benefit, diagnosis driven. It is covered 100% by that benefit. There is no co-pay for the supplies, equipment, medications, services that treat the terminal condition ( when previously you had a copay) now you do not , so it is considered free. It is not a right wing propaganda belief. It is a fact. Hospice nurses are very special people who want to serve their patients and make sure their lives are better by receiving the services that yes, your paid for . The dedication to the profession has absolutely nothing to do with politics. If hospice was politically driven by this administration... It would not exist.
Oh, that was really really interesting. Informative and wonderful. Thank you. I am on hospice care at the age of 82 for my cancer that I have had for eight years, but I have never allowed surgery, radiation, or chemotherapy into my life. The pet scan approved the cancer as positively there. And then the wound in the breast burst forth in the form of a dangerous bleedout , but I’ve been tending that wound myself for eight years. Since October I have really improved because I’m on Hospice Level One. You did not address what we have here for Medicare as level one, two, three, or four. I am still very active during the hours that I’m awake. My mind has not gone, so people find it hard to believe that I am on Hospice because of its reputation as you mentioned. Your palliative care information was interesting. I had never heard of that, but I am in a very rural state. (Maine).
I had a 50yo room renter that often went to ER, he had chronic back structure & nerve system from it, so he often fell and EMT'd to ER. Your description of palliative care sounds like his confusion of his care would've helped him survive, but w/o such he passed away from falling more, infecting himself from falls and on life support til he passed. I can only think he hadn't persisted enough with doctors to get right plan, in fact I had noticed such backoffs by him.
Thank you for this vid, hope my tale here further gets folks pushing there docs.
She explained this soooooooooo well. Thank you so much for taking the time to do so 🥰🥰🥰🥰🥰🥰
Hi This RUclips is very helpful. I'm caring for my 95 yr old mom. I've had to leave my home, husband and family to do this. I do have my husband and families blessing, but this is hard. I've been here a little more than a yr. I'm tired. I'm in a really good support group and I plan to stay with them because they've been a tremendous help. However,
This information is priceless. I have metastatic breast cancer (in remission right now), and I've always just had a VAGUE concept that hospice and palliative care were the same thing - ha! Thanks a million!
An especially helpful explanatory vid with info we all need to know, educated in advance…for self AND as your loved one’s Patient Advocate. Thank you!! ❤
(suggestion: can you help educate all on how helpful and necessary it is to have a Healthcare Proxy and/or Medical Power of Attorney? So much confusion out there. Without it, your hands are tied in trying to help your loved one at critical times. Perhaps host an attorney? States can differ, but a high level overview would help to establish such BEFORE your loved one has an acute or chronic life health issue. TIA! 🤗💙)
WOW! Thank you! I really thought I understood. I was SO wrong! Thank you, thank you, thank you!
I would NEVER BURDEN my family with End of Life Care, now that I understand! I will GO to Hospice if needed. Dying at home, is a luxury I can’t afford. I wanted to die with my animals by my side as they have given me the most comfort.
This was so very very informative. This is the first truth I have heard. 💗💗💗💗💗
Can a person participate in hospice if they do not have any family? If not, what other options are there for a person that is terminal, has no family to provide care, but wishes to die at home? Or, for that matter, does not have enough money to pay for a long-term care facility?
Thanks so much Nurse Julie! You informed me about something very important. My mother passed away on September 18, 2023. She was on palliative care. During the summer when she was in the hospital I didn’t know the difference. Thanks so much!😊
💕💕💕💕
I decided to watch this video because my mother has been in palliative care for past 2 yrs. She has stage 4 lung cancer with liver mas. They do say her immune therapy won’t cure her but will help her symptoms. I didn’t really understand what was going on so this video is very much appreciated. The dr isn’t very straightforward when it comes to questions but maybe answers my mother might not want.
Also your last few words is actually a book I was directed to read on death and dying it’s actually a mandated read for psychology students. Very helpful when you dealing with a terminally ill family member
This was a great presentation. I am a public health nurse surveyor supervisor and the public will benefit from this instructive video.
From what you're saying about palliative care in the U.S. versus Canada, it sounds quite different. In Canada, end-of-life care often allows the terminally-ill person to enter and live in a palliative care FACILITY where they will stay until they die. Every aspect of the person is looked after. I'd prefer that. Some offer palliative sedation. And because we have MAID (medical assistance in dying) in Canada a dying person can opt for that in a palliative care facility provided it's NOT a faith-based facility. The rules about that MUST change. I love your videos, Julie.