I have Duchenne Muscular Dystrophy and have a trach and use a ventilator and I am 41, I have chronic severe pain and getting pain meds has been a struggle so I’ve been told that hospice would provide better pain management but I did not know everything you shared so thank you for sharing. I am also always in bed and my life is still very full and thank you for your explanation of how you are able to create your videos.
Thank you for sharing some of your story with me. I am so sorry you have chronic severe pain. I am sorry it has been a struggle to get pain meds. I hope you are able to find pain relief without having to go on hospice. Thank you for all your kind words. All my best to you.
The "Opioid Crisis" is a fallacy. The media, includes those who take "street drugs" (heroine, cocaine, amphetamines, etc.) with those of us who take opioid pain medication for chronic pain. Sorry, but NOT all of us are heroine addicts. The media creates a false fear among the people, thus putting pressure on physicians...It is absolutely ridiculous! Your physician should be able to make a sound decision based on their knowledge of medicine and your medical history, NOT on what some politician has decided! My guess is that most physicians have NO first hand knowledge of what chronic pain is.
Thank you SO much for making this video. I wish more than anything that palliative care for people who are ineligible for hospice or don't want to go on hospice were more widely available and accessible. I am so sorry you've been put through such horrendous medical neglect and frankly, torture. This is a side of hospice care that very few people even realize exists. This sort of conversation is why your medical knowledge plus your experiences as a disabled person with complex chronic illnesses are so incredibly necessary. My grandpa actually had a similar experience in hospice to the worst case scenario you're describing. My grandpa had a rare neurodegenerative disease called Multiple System Atrophy (atypical Parkinsonism which is a lot like Parkinson's disease that doesn't respond to medication, plus POTS, plus hand contractures.) He missed so many appointments because he wasn't feeling well, so his neurologist offered to switch him to hospice even though she said she knew he wasn't dying at the time. My grandma and grandpa didn't fully understand what hospice was. I don't think they were given true informed consent. When the rest of my family and I tried to explain it to them, they wouldn't hear it. My grandpa thought hospice meant the doctor would come to him rather than him going there, so he signed off on it. He spent two years on hospice, and suffered from untreated pneumonia that his hospice nurse missed for possibly the entire time. He didn't have pain, just very low oxygen saturations, dyspnea, weakness, loss of appetite, weight loss, and a feeling of impending doom. The nurse rationalized his symptoms for years as "his disease must be affecting the muscles associated with breathing," which MSA doesn't actually do. He kept saying something felt wrong, and he wished he could see a doctor. Two days before he died, he finally revoked his hospice and sought emergency medical care because he didn't want to die. It was too late at that point, because by then he was septic and the pneumonia had progressed to bilateral empyema with fibrin deposition. What makes it even worse is that the hospital kept trying to push him back into hospice, because it would have been cheaper than his hospital stay was. I am sure he could have lived longer if he had been able to get routine medical care. He was able to walk until the end of his life, which is so rare for people with MSA or Parkinson's. I really think his death was preventable and not inevitable. Sorry for the extremely long comment. I just want people to know, just like you do, that hospice is not alwalys the best choice for every patient. And sometimes it can do much more harm than good.
Thank you so much for sharing some of your grandpa's story with me. I am sorry he went through so much. I cannot imagine everything he endured. I cannot imagine everything your family went through. I completely understand how his pneumonia was missed. It is absolutely heart-breaking that it took so long for him to get medical care. I am so sorry to hear of your grandpa's passing. I am sure he was a really special person. i hope you are able to cherish the time you spent with him. May his memory be a blessing.
I agree. There are too many misconceptions about hospice, etc. *Deepest condolences on your losses* 1) I wish his neuro doc would have looked into this further and spoken with a hospice rep and a palliative care rep, let alone other doctors! 2) I also think the hospice staff should have explored his wants/needs more thoroughly. 3) Sorry, but that was a sucky hospice nurse: that he/she missed the pneumonia repeatedly! 4) His passing would have come eventually, but it did NOT need to have been this way!! -I think that is one of the most damaging parts that deepens the grieving process: That it was NOT supposed to have been that way!!
You are absolutely rite, you are making a difference. Your videos are very helpful and inspiring. I'm blessed not to need breathing support, but my baby does. I'm grateful that instead of giving up, you made a choice to fight and to help us fight.
I think options vary from place to place but palliative care can sometimes be very similar to hospice. My daughter is followed by a palliative care team. They help us when we need to look at the pros and cons of different decisions. Some treatment options increase quantity of life while reducing quality. Some we think increase quality while reducing quantity. Some treatments increase both quality and quantity. Sometimes it can be hard to distinguish and quality means different things to different people. Maybe a palliative care doctor can help you with some of your pain issues without the need for a hospice label? Pain medication should always be available to those who need it and you shouldnt have to give up life sustaining tx to recieve pain management.
Thank you so much for sharing. I really appreciate all the information and insight. I am glad your daughter has a palliative care team. It sounds as though they are quite helpful.
Well, I’m glad I caught the statement you made at the end of this video, which was much more positive than the video itself. You had me worried to death for a minute there, because as far as I can tell, you look Great! and you don’t look like you’ll be needing anything like Hospice or Palliative care AT ALL!, You have many, Many! Great years ahead of you, if I may just sum it up (because I have my fatigue issues too), and say: You Go Girl ! ❤❤💐💐💐
My dad went home on hospice yesterday. He’s almost 91 with a bleeding disorder and advanced dementia. I struggled with palliative v hospice. This video was such a great help. Such a long, hard goodbye. My daddy really hasn’t been here in almost 7 years. Your positive attitude is really a godsend to patients and caregivers. I struggle as I also have responsibility for my completely disabled sister I don’t have to the day to day hands on care but keeping two households running and up on paperwork while working full time keeps me very busy.
Thank you so much for sharing some of your story with me. I am sorry you are going through so much. Your family is very blessed to have you. Thank you for all your kindness. All my best to you and your family.
My father in law was only on hospice for two weeks before passing from late stage dementia my dad was on hospice almost a year before passing my sister and a brother both passed from cancer both about two weeks all what made them go quickly was they give them a lot of morphine that keeps them knocked out and your right malnutrition I call it starvation all were under 100 pounds when passing. It’s sad because of the way people abuse pain meds people like my loved ones can’t get the meds they need until hospice and then it’s just to keep so much morphine in the so they stay unconscious until death not eating the whole time. It’s a jacked up society and system.
Thank you for sharing some of your story with me. I am so sorry you have been through so much. I cannot imagine everything you have endured. May your loved ones' memories be blessings.
My dad has Parkinsons, he developed aspiration phenemia now they want him to go hospice with no ventilator, no nutrition or water, what's your opinion please? They're telling me he won't feel any pain
@@liliacortes2801 Thank you for sharing some of your story with me. With no ventilator, no nutrition and no water, he will be dead in a week or less. If he was my dad, I would continue getting medical treatment and not go on hospice. I am so sorry you are going through so much.
Another great video. Thanks for makin it, most people have no idea that hospice not just accommodates the fatal, it can be fatal, this info needs to be out. Also, Happy Halloween!
My sister is a hospice nurse. Hospice is a wonderful program for people who are at end of life. Anyone who isn’t ready to die shouldn’t sign up for hospice care.
This is awful to hear. I’m so sorry to hear this as it really doesn’t make any sense! I would encourage you to reach out to your state representatives - they should know about this. I’m not sure if the MDA has any lobbyists in your state but I would see if you could get them involved as well. Also, thank you for posting about your conduction and all of the things you have/are going through. I worked with mitochondrial diseases and it’s amazing how these can affect people differently. I truly miss my ALS and MDA patients and helping them live the best life they possibly can. One of the best jobs I’ve ever had. Good luck to you and your wishing you all the best!!
Thank you so much. I appreciate the information. I will see if I can get my state representatives to take up an interest in this. Thank you for sharing about your patients. I am sure you were a favorite of theirs. Thank you for all your kindness.
Hospice told me they would not buy formula for feeding tubes as it's considered life support. My husband has severe dysphagia and would not be able to be alive for very long on hospice either. He is also on oxygen. Though low it keeps him pretty stable. I do think the air compressor humidifier he has cuts down on his ability to exhale (she has a video about cpap that she explains this) The home health nurse we had for respite mentions hospice every time she comes over.
Thank you for sharing. I am sorry to hear about the challenges your husband faces. I am glad you know what will and will not be available on hospice care. All my best to you and your husband.
God has definitely given you a mission, and he is keeping you in existence. You are so awesome and inspiring. Keep going and keep loving life and yourself. May God Bless you. Im keeping you in my prayers. Definitely, an attitude of gratitude is so the way to go. ❤🌹😍
Thank you for teaching us all the differences in Hospice Care. Wow it seems something’s need to change. If the person is in a certain condition why allow them to suffocate. Wow! That’s a terrible way to die even if you are on the way out in days like who’d want to not have the option of being able to breath, Thank you for your kindness to share your story. ♥️
Wouldn't it be nice if there was a form of care in between hospice and general care for ppl with a chronic painful illness so you could have access to pain meds and similar care to ppl in hospice? Maybe one day as someone will put together something of the sort.Ppl in chronic pain deserve massages,pain medication,a lovely garden and someone to communicate with as well considering they can't do much and maybe be bed bound but not terminal 🤷🏻♀️
Thank you for sharing. Technically, there is a program called palliative care. In this program, a patient is supposed to have access to pain medicine. However, due to strict pain medicine prescribing laws and restrictions placed on pharmacies, many palliative care programs either do not prescribe pain medicine or only prescribe very low dose pain medicine. If pain medicine is prescribed, the patient may not be able to get the medicine from the pharmacy due to pain medicine distribution restrictions placed on the pharmacy. As I have been told (and other viewers have expressed to me), the general attitude in the medical community is if your have a chronic medical condition and need pain medicine, you need to go on hospice in order to have access to pain medicine.
I thougt hospice and palliative care goals were exactly to ease the suffering due to dispnea, malnutrition, vomiting, pain that do not respond to other treatments anymore. Obviously palliative care cannot treat the cause, but try to ease these symptoms with different combinations of treatments, inclusing deep sedation, because patients are struggling mentally too, they cannot sleep, move, talk etc Plus, palliative care and hospice doesn't meal terminal conditions/finals days. They are made to help in cronic illnesses too. This is because people doesn't know that palliative care or hospice doesn't mean end of life or they only provide relief to patients in their final days. It means ease the suffering when nothing else is enough effective.
Thank you for sharing. I appreciate the insight. My apologies. I did not clarify in this video that the six months or less to live was hospice criteria for the USA. I sometimes forget my audience is international. If you do not live in the USA, then the criteria for hospice may be different. In the USA, a person can only be enrolled in a hospice program if a medical provider believes the person has six months or less to live. As quoted from Cleveland Clinic: "Healthcare providers use Medicare guidelines to determine eligibility for hospice care. According to Medicare, you’re eligible for hospice if your life expectancy is six months or less if your illness were to run its natural course. Providers recommend hospice when treatments to cure your condition are no longer beneficial, and providers don’t expect your condition to improve." Here is the website if you wish to learn more about hospice in the USA: my.clevelandclinic.org/health/articles/21673-hospice In hospice in the USA, a person cannot receive life extending medical intervention. In hospice, a person cannot receive dialysis, invasive ventilation, IV nutrition, and in some programs patients are also denied any form of ventilation (such as CPAP and BiPAP) and also no feeding tube formula. In the USA, palliative care can be started at any time during a person's illness. Palliative care does not mean end of life. However, hospice care does mean a doctor believes a patient has six months or less to live. If you would like more information about hospice versus palliative care, please see the following video: Hospice versus Palliative Care. What is the Difference: th-cam.com/video/Rt0nHFXDIFI/w-d-xo.html
Thank you for the informational video. You always inspire me with your positive attitude in light of your health situation. Have you considered doing a video on Palliative care? Would palliative care be something you would consider if you are faced with that decision in the future? I am so proud of you and wish you the best. One of your faithful followers and prayer folks-Take Care, God Bless Russ
Thank you for all your kind words. I have a video on hospice versus palliative care, but perhaps I should just do a video on palliative care. I have tried to go on palliative care, but it seems there are no palliative care doctors in my area. Thank you for all your support. I meant to respond to your email tonight, but I am out of energy. I hopefully will respond tomorrow. Have a great night.
Thank you for making your videos, and I am sorry for the burden*** that life has presented you with--not just medically, but also with the relative hardship of continually educating myself (and others!) on what life is like with a severe chronic illness. I have type one diabetes, and though of course my disease hasn't required of me as much medical intervention to sustain myself, it is still something I would quickly (and painfully, I hear) die from within a matter of days without medication. I don't usually "appear" sick, so I run into a lot of (distasteful? ignorant? Occasionally cruel?) opinions from others on what makes a life worth living and what kind of life is worth living. Thank you for being so vocal and open with your life experiences and helping show others that life can have so much more meaning beyond just possessing perfect (or even just decent) health. Your advocacy helps all of us, even people like myself who are privileged enough to have a treatment available that allows me to almost live a "normal" life. ***I apologize if the term "burden" is inappropriate here. I just mean to say that I see your strength and drive in the face of responsibilities and care above and beyond "the norm," and I hope they do have a cure for your condition in the very, very near future so that you and others may enjoy more rest.
Thank you for sharing some of your story with me. "Burden" is a great word to describe what has been placed upon me. Thank you so much for sharing your insight. I appreciate your kindness. All my best to you.
Keeping you in my prayers. I hate seeing anyone suffer. I'm glad I will see you in heaven some day. You will be blessed for you suffering. Not sure why bad things happen to good people but I believe God has a reason and purpose. It must be so hard going through all these trials. I don't think I would have handled it as well as you.
Comoared to so many other countries, the u.s could so much better for people( patients) with complex medical conditions and or cancer etc. I admire this patients resiliency and resistence to go on hospice. Perhaps she can go ob palliative care? My prayers to this brave patient. ❤❤❤
I won't go to hospice myself too.. I'd go for palliative care, but stay home with my family... I have medical marijuana which is good relief... 2:23 i do not know why is this like This..i got NG.. getting PEG soon..my reasons to not go to hospice is different thsn your reasons, may God bless us with all of us suffering from degenteive diseases.
Im very proud of you. I understand,i worked in nursing home my mom is in the nursing home and i believe in nda's for older people but i dont think that should mean no antibiotics or ivs. But alot of older people really want to go.
For those that are dying soon though hospice is amazing. For instance my dad had 2 weeks to live from cancer and hospice was amazing at letting him die a pain free peaceful death.
Oh Lord Jesus, comfort this dear woman, and may she know You are always with her and for her. 'The joy of the Lord is my strength' (Nehemiah 8:10), 'My grace is sufficient for you, for My power is made perfect in weakness'(2 Corinthians 12:9) His love and blessings.
It seems what your explaining is hospice is end of life care, without things that would extend life, and being on a vent and/or feeding tube/tpn conflicts with that. Sorry to hear about your friend. You seem to have a good attitude about your life.
Please know that not all hospices will deny your use of a vent or TPN. There are many out there that have additional support (usually donations from the community) that they can utilize. Usually these are nonprofit organizations. Please talk with the hospices near you to figure out if you can make this work. Also-you can always unenroll from hospice and decide to have a feeding tube placed or start a vent. Hospice care is evolving just like other care. Our idea of what end of life looks like is very different as new treatments or technologies are developed. I have worked as an ALS nurse clinician, a hospice nurse manager and now an oncology nurse clinician and know that things change over time - just like insurance will change what they cover. Hospice is a wonderful service that should absolutely be utilized as much as possible. Unfortunately many for-profit hospices are not looking out for the best situation for the patient and family and may be more about the bottom line $$.
Also-the best thing you can do is to ask. Ask your doctors, nurses, the hospices near you, national agencies, etc. Learn about the resources you have available to you in your area and nationally. Every situation, every condition, every family/support, every business is different. Please advocate for yourselves or loved ones.
Thank you so much for sharing. What great insight. You mentioned you worked as an ALS nurse clinician and hospice nurse manager. May I ask, did you ever have ALS patients go on hospice who had a tracheostomy tube and ventilator? I ask because the ALS group in my region has been unsuccessful at getting any hospice program to accept an ALS patient who has a tracheostomy tube and ventilator unless the patient/family agrees to disconnect the patient form his ventilator. I was wondering if you knew of any hospice program which accepts patients with tracheostomy tubes and ventilators and allows them to continue using them while on hospice. If you do, please share the name(s) of the companies so I can pass it along to the group. Thanks so much.
I do know these companies are out there and have absolutely had patients who have not had to have a “disconnect” date for people with trachs and vents. I think a lot of it comes down to finding a non-profit hospice that is willing to work with the ALS team about what is expected for length of life for that specific patient (having the neuromuscular specialist or pulmonologist call the hospice director to talk directly can help). We now know that living with a vent with ALS is not always (and really rarely is) infinite. Muscle weakness continues to occur and sometimes vent power can’t overcome come this weakness or “stiffness” of the thoracic wall. And, as patients live longer, we are beginning to see more and more cognitive dysfunction and/or frontotemporal dementia (no longer can we say that ALS doesn’t affect your cognition or personality). And, sometime patients or families are exhausted and no longer have the drive or energy to keep going but aren’t sure when they want to stop. Having goals of care conversations with patients and families is extremely important and why it is essential people get hooked up with a multidisciplinary, specialized clinic. I live in the Midwest and have some great hospice companies to work with but it takes a lot of time and good communication with clinics and these agencies. As new technology comes into play (i.e. moving from cpap to BiPAP to AVAPS) I had to have a lot of conversations with hospices about how this more expensive tech actually helps with quality of life - not just quantity of life - and that is and should be the real goal of end of life care. Some places aren’t willing to consider this but more and more are. It’s also really helpful to have a medical team willing to advocate and help fight for patient rights. If you don’t have that, it can be hard to “fight”the system. I would advise the patients in your area to reach out to their medical teams and also try to connect with national groups like ALSA or MDA to help them with this as well. Thanks for your questions. The more education we can get out to everyone the better lives people can live-no matter the diagnosis or time people have left! Thank you!
@@erinspringer9944 Thank you so much for the information. I appreciate all the insight. I will continue to search. The ALSA has tried to help, but they have not been able to locate any hospice programs which allow trach and vented patients in our region. Also, the MDA does not have any suggestions. My medical condition is under MDA. The MDA program I work with does not place their patients on hospice because they have had their patients disconnected from their vents. I have also learned, some insurance companies will not pay for hospice if the patient has a trach and vent, and the patient continues on the vent while in hospice. One person in Washington state has been informed it is state law that if a person with a trach and vent enters hospice, he/she must be disconnected from the vent as soon as hospice services commence. I have not been able to find any laws, but Washington state's law may also be in effect in my state, and that may be why no hospice program will take trach and vented patients unless the patient/family agrees to disconnect from the vent.
Not the experience we had with my mother when she went on Hospice. They could not have been better. Nurses came often to help with personal care. She was never short of pain medicine, and we never paid a cent for any of it, for her oxygen or her hospital bed. She did not die within days, either. They provided everything she needed and checked with us constantly to see if she was getting low on anything she needed. Pads, gloves, bathing wipes, all of it. We had 24-hour access to our certain nurses and hospice workers. We had two supervisors who visited at least once a week to see how we were doing, to see if how my mother looked and making sure that everything that could possibly be done for her was being done. We had the offer of a counselor and spiritual support as well. I can’t praise them enough? They were with us constantly in her last few days.
After my husband had a mild stroke, hospice nurses began coming to our home. They wanted to give him pain medicine (Codine). He told them he was not in pain and would not take it. I realized what they were up to and got rid of them. I have no idea who sent Hospice unless it was his private doctor. A hospice nurse told me that it was a wonderful thing to watch people die. I dispise hospice and social workers more than anything. ANGELS of DEATH !
@@foggybrow2 Thank you for sharing some of your story with me. I am sorry that happened. However, I am so happy you recognized what they were trying to do. Kudos to you.
Hello! , I have a few questions, my relative is on a ventilator and at the hospital ward they use a transportation ventilator and I am not sure if that’s okay to be used for a long period of time ( 1 month ) and it would be great if you would recommend home ventilators. Thank you so much! ❤❤
Hello. Thank you for sharing. Transportation ventilators can be used for a long period of time. Please make sure the ventilator is connected to a heated humidifier. A heated humidifier is important to prevent the airways from drying out. Home ventilators: Trilogy 100, Trilogy Evo, ResMed Astral, Movair Luisa, Newport HT70 plus, Breas Vivo, etc. There are many home ventilators. The hospital should know which ventilators are available in your area.
You need to talk to @Nurse Hadley. I think you have a lot of misinformation because this is would be a lot of agreements in place for this to occur. Also the hospice placement would have to have everyone’s sign off. You’re a competent person.
It is not true that a doctor must say a person has 6 months or less to live in order to go on hospice. All a patient has to do is refuse to go to a hospital. My brother had no terminal illness but was tired of going to the hospital, so he went on hospice, which was the best option for him. Also, patients can come off of hospice at any time and go back on. A neighbor found out that hospice was a godsend to him and kept him comfortable. The nurse is available 24/7 and knows exactly what to do.
Thank you for sharing. I appreciate the insight. I do not know which country your brother lived in. So it is possible your brother was on hospice if he did not live in the USA. Different countries have different criteria for hospice eligibility. (My apologies. I did not clarify in this video that the six months or less to live was hospice criteria for the USA. I sometimes forget my audience is international.) In the USA, a person can only be enrolled in a hospice program if a medical provider believes the person has six months or less to live. As quoted from Cleveland Clinic: "Healthcare providers use Medicare guidelines to determine eligibility for hospice care. According to Medicare, you’re eligible for hospice if your life expectancy is six months or less if your illness were to run its natural course. Providers recommend hospice when treatments to cure your condition are no longer beneficial, and providers don’t expect your condition to improve." Here is the website if you wish to learn more about hospice in the USA: my.clevelandclinic.org/health/articles/21673-hospice If your brother lived in the USA, it is possible a doctor may have certified he had six months or less to live in order to qualify for hospice. If no doctor certified he had six months or less to live, your brother was most likely not on hospice. He may have been on palliative care. (Many people often call palliative care hospice, but they are different programs with different eligibility criteria, but they both aim to provide comfort care to the patient. In palliative care, a person can choose to forgo any additional testing or treatment for his medical issues.)
Thank you for your reply. Yes, my brother was told by his physician in NY that he was eligible for hospice if he refused to go to the hospital. He then moved to GA into an assisted living community and was again told he could go on hospice by refusing to go to the hospital, so he finally did it, which worked beautifully for him and the family. It was not palliative care. It was definitely hospice.
Pancreatic attacks are worse than anything I’ve ever experienced! It was worse than my baby flipping over while I was in hard labour, it was worse than all 3 of my hard labour 20 hr pregnancy labours ! I would beg for death in my head!! It was just an evil insane pain.. it’s scary that such pain is even possible in human beings!!
Thank you for sharing. I am so sorry you have gone through so much. I cannot imagine everything you have endured. I appreciate all your insight. All my best to you.
@ Oh wow! What a beautiful treat! I never expect a response so thank you from the bottom of my heart!❤️ You are such an amazing inspiring person, I pray you have health and happiness all your life!❤️❤️❤️
I understand your concerns about dying a painful death from suffocation. But as I understand it, when you are on hospice with severe respiratory problems, they will put you on high doses of morphine to prevent that air hunger. The effects on your body from hypoxia will still happen, but the suffering will be mitigated.
The rules for prescribing pain medication are because of drugs users. in terms of drugs, the new generation of opiods were much stronger than anything before. Even pharmacies have been shut down because they fulfilled too many prescriptions.
Well if one is dying anyway what’s the fear of a slightly hastened death? Hospice is a far better way to go than in a hospital struggling till your very last second. And if one is scared of a ventilator exactly what does one think will happen in a hospital ICU setting? I would never ever recommend hospital care over hospice care unless one simply wants to suffer more deeply while slightly delaying the inevitable smh. Plus to try and convince others hospice is bad is dangerous rhetoric and could cause other people harm. And one doesn’t have to accept any kind of nutritional intervention on hospice; they never have had to. I’ve never seen hospice force anything on anyone. But I do resent it when I see people trying to convince other people hospice is bad when I’ve seen it save so many people from horrible end stage diseases and painful deaths.
"Horrible" is a subjective opinion and not an objective fact. Educated guesses are not progressions written in stone. I worked with an elderly woman that had a stroke. She was bed bound in a flaccid state and could only move her head. She could eat and swallow and gibberish talk just a little. She was like that for 6 yrs before she passed away. Sure, hospice could have hastened the end of life for her, but that would have been 6 yrs without the blessing of having the love of her family. My own husband has a similar situation. He had an undiagnosed aneurysm rupture. We were only married a month when he went down. We have, so far, had 18 months of him knowing how much I love him. My mom had lung cancer. She went 15 yrs before covid took her out. Hastened death would have robbed these people of the love of their families. My mom got married in the interim.. she found love as a cancer patient. I believe people need love at end of life.. not overdosed on morphine
@autumnwilliams7215 Thank you for sharing. I am a little confused by your comment. I am not trying to convince others hospice care is bad. I am simply sharing why I would never go on hospice. It is important people who are using life support (whether that is a ventilator or IV nutrition) know and understand that hospice care will end access to these services. I believe people should be well aware of what they are getting into when signing up for hospice. Unfortunately, hospice care is a HUGE money making industry, and the drive to sign people up for hospice is enormous. Hospice programs may not relay all information to patients and/or their families in order to get the patient signed up in the hospice program. My hope in creating this video is to help spread awareness and to encourage people to discuss this topic.
@@LifeAfterSAHStroke My 90-year-old father had a massive stroke last October, and within hours of admission was readmitted to Hospice, where he died peacefully 4 days later. Nothing could be done for him, so he was kept comfortable until the end. That's what he would have wanted. Goodbye, Daddy.
I feel as though she presented hospice in a neutral (objective) way. She’s comparing hospice to non hospice measures for those who may be living with a chronic condition.
I don't think it's meant to be negative she's simply passing on information that she was given in some way. The information in this video does not always apply it seems. Each individual should do their own research and make sure any hospice or other home care program will fit with their needs and desires for care.
Girl, you are much too lively for Hospice. I am a Hospice nurse. We've only discontinued TPN in one cancer patient who made the choice to stop life-prolonging treatment, and realized he was only feeding his cancer. None of the nourishment went to his body: all to his tumour. Yes, you have a complicated health situation, but you are definitely not ready for Hospice yet. I've also had several patients that doctors told them they could only go home on hospice because of 1. as you said: Need for pain medications, 2. They needed supplemental oxygen, and perhaps some in-home care. -Not all physicians are well-versed on hospice criteria. When the time comes, and it is determined that if the disease process were to take it's natural course without medical intervention, that death would most likely ensue withing six months (average), then the decision is made, by the patient, physician(s), medical team, family, etc. to go on hospice. Not everyone has to. It is a very individual choice.
@@LifewithaVent There are so many misconceptions about hospice. I had one really great experience when going to an assisted living facility to provide into to the residents. An older gentleman in a mobility scooter greeted me at the door. He introduced himself, and asked me my name. Then he asked what kind of nurse I was. I told him. He replied, "No offense Ma'am, but I hope I never see you again!" -He made my day. I really hope you're doing better. I've seen some of your updates. Wishing you the very best!
Your medical issues are insane. Pancreatitis is awful. I hope you have good support in person. You could really educate lots of medical professionals xx
Sounds horrible that you can't keep your nutrision. Why can't you get pain medicin since you are very sick? i'm a nurse in sweden and of course you would get everything you need here. It makes me very sad and upset. ♥
Thank you for your question. Pain medicine in the USA is tightly regulated. There are many laws regarding pain medicine. Also, doctors get their medical licenses taken away if they prescribe too much pain medicine. Most of my doctors do not prescribe pain medicine to protect themselves from facing legal action and losing their medical licenses.
Hospice is for people who have elected to forge aggressive or curative care. It’s fine that you aren’t there yet, but it is the right thing for many people. It doesn’t mean hospice is bad. It’s just not for you.
I think you should have pain meds. Try to find a doctor that is ready to retire. IT a shame that you have to fight for pain meds. keep the faith GOD IS LOVE
@@LifewithaVent I don't know if this is something too personal for you to answer, but (I am Jewish) I notice here and there hints that you may have some kind of Jewish connection. I know you are a very deeply spiritual person, and I greatly admire that. It's spiritually uplifting and a true inspiration to watch how you look at every aspect of life as a blessing no matter how difficult life gets for you, no matter how many obstacles have been put before you. You come back with gratitude and love. Your spiritual power is highly unusual and rare. Your life has deep meaning and you have touched many many lives.
That sounds like murder, I mean if the patient wants the support from hospice car but still live as long as possible, that they can just take away something like a ventilator. I didn't know it was like this, horrifying.
I want to encourage you to consider palliative care for pain control because you are in that awkward spot of being insanely high maintenance and subsisting on that high maintenance. I'm not being mean, there were conversations had about sending me for terminal sedation but a hail Mary surgery bought me time. Palliative care made suffering this in between living and dying easier which made fighting to stay alive doable.
Thank you for sharing. I had no idea TH-cam had that. I have heard of people on FB going to the unwanted place of confinement, but I did not know TH-cam had such a place. I appreciate you taking a risk to leave me a comment. That means a lot to me. All my best to you.
Thank you for sharing. Are you familiar with the CDC's 2016 opioid guidelines in which doctors face criminal prosecution for prescribing pain medicine? If you are unfamiliar with the CDC's rules, here is a brief overview: Many have struggled to get opioid prescriptions written and filled since 2016 guidelines from the Centers for Disease Control and Prevention inspired laws cracking down on doctor and pharmacy practices. The CDC recently updated those recommendations to try to ease their impact, but doctors, patients, researchers, and advocates say the damage is done. “We had a massive opioid problem that needed to be rectified,” said Antonio Ciaccia, president of 3 Axis Advisors, a consulting firm that analyzes prescription drug pricing. “But the federal crackdowns and guidelines have created collateral damage: patients left high and dry.” Born of an effort to fight the nation’s overdose crisis, the guidance led to legal restrictions on doctors’ ability to prescribe painkillers. The recommendations left many patients grappling with the mental and physical health consequences of rapid dose tapering or abruptly stopping medication they’d been taking for years, which carries risks of withdrawal, depression, anxiety, and even suicide. Source: www.cnn.com/2023/03/17/health/opioid-chronic-pain-cdc-guidelines-khn-partner/index.html Furthermore, many healthcare providers have been persecuted for legally prescribing pain medicine. Here is an except from an article written by a healthcare provider: The CDC claimed - without supporting references from the medical literature - that a threshold of diminishing benefits exists for opioid doses above a 120-morphine-milligram-equivalent daily dose. They also recommend non-pharmacological, non-invasive therapies as “preferable” to opioids, despite the fact that no body of validated trials data demonstrates any such benefit. The message between the lines of the CDC guidelines is “doctors who prescribe opioids do so at their own risk - and the slightest error on your part in a hostile regulatory environment can put you in jail.” As a health care writer and advocate for people in pain, I communicate with patients and clinicians every week. What I see is that pain medicine in the U.S. is failing both patients and clinicians, largely due to the CDC’s faulty narrative and the DEA’s harassment and prosecution of clinicians for legally and ethically prescribing opioid painkillers to their patients. The result? Millions of Americans living with severe chronic pain are being denied safe and effective pain management with prescription opioids, deserted by doctors afraid of being targeted and persecuted by DEA and state medical boards. Source: www.statnews.com/2024/07/11/doctors-overprescribing-opioids-didnt-cause-overdose-epidemic/?fbclid=IwY2xjawG0ej5leHRuA2FlbQIxMAABHQHVQgwmN6mbA7tupGOtZfMeJwdNEyRGZThKXU76ld4Mu_-Aib2ZajMsDg_aem_t4IKs_BN6HNSc_7O5CJeFQ Have you tried to get pain medicine in the last years? If you have not, please try to do so. When you try to get pain medicine, please share your experience here. Oh, did you also know many pharmacies have restrictions on the amount of opioids they receive? So even if you get a prescription for pain medicine, there is a chance you will not be able to get it filled at the pharmacy.
The reason it's hard to get pain meds in the US is that opioids were overprescribed for many years (for profit). Many drug addicts were created. Now harsh rules are in place to stop the overprescribing of pain meds.
I have Duchenne Muscular Dystrophy and have a trach and use a ventilator and I am 41, I have chronic severe pain and getting pain meds has been a struggle so I’ve been told that hospice would provide better pain management but I did not know everything you shared so thank you for sharing. I am also always in bed and my life is still very full and thank you for your explanation of how you are able to create your videos.
Thank you for sharing some of your story with me. I am so sorry you have chronic severe pain. I am sorry it has been a struggle to get pain meds. I hope you are able to find pain relief without having to go on hospice. Thank you for all your kind words. All my best to you.
@Build_dreams Thank you for sharing.
The "Opioid Crisis" is a fallacy. The media, includes those who take "street drugs" (heroine, cocaine, amphetamines, etc.) with those of us who take opioid pain medication for chronic pain. Sorry, but NOT all of us are heroine addicts. The media creates a false fear among the people, thus putting pressure on physicians...It is absolutely ridiculous! Your physician should be able to make a sound decision based on their knowledge of medicine and your medical history, NOT on what some politician has decided! My guess is that most physicians have NO first hand knowledge of what chronic pain is.
Thank you. I got approved for palliative care.
Thank you SO much for making this video. I wish more than anything that palliative care for people who are ineligible for hospice or don't want to go on hospice were more widely available and accessible. I am so sorry you've been put through such horrendous medical neglect and frankly, torture. This is a side of hospice care that very few people even realize exists. This sort of conversation is why your medical knowledge plus your experiences as a disabled person with complex chronic illnesses are so incredibly necessary.
My grandpa actually had a similar experience in hospice to the worst case scenario you're describing. My grandpa had a rare neurodegenerative disease called Multiple System Atrophy (atypical Parkinsonism which is a lot like Parkinson's disease that doesn't respond to medication, plus POTS, plus hand contractures.) He missed so many appointments because he wasn't feeling well, so his neurologist offered to switch him to hospice even though she said she knew he wasn't dying at the time. My grandma and grandpa didn't fully understand what hospice was. I don't think they were given true informed consent. When the rest of my family and I tried to explain it to them, they wouldn't hear it. My grandpa thought hospice meant the doctor would come to him rather than him going there, so he signed off on it. He spent two years on hospice, and suffered from untreated pneumonia that his hospice nurse missed for possibly the entire time. He didn't have pain, just very low oxygen saturations, dyspnea, weakness, loss of appetite, weight loss, and a feeling of impending doom. The nurse rationalized his symptoms for years as "his disease must be affecting the muscles associated with breathing," which MSA doesn't actually do. He kept saying something felt wrong, and he wished he could see a doctor.
Two days before he died, he finally revoked his hospice and sought emergency medical care because he didn't want to die. It was too late at that point, because by then he was septic and the pneumonia had progressed to bilateral empyema with fibrin deposition. What makes it even worse is that the hospital kept trying to push him back into hospice, because it would have been cheaper than his hospital stay was. I am sure he could have lived longer if he had been able to get routine medical care. He was able to walk until the end of his life, which is so rare for people with MSA or Parkinson's. I really think his death was preventable and not inevitable. Sorry for the extremely long comment. I just want people to know, just like you do, that hospice is not alwalys the best choice for every patient. And sometimes it can do much more harm than good.
Thank you so much for sharing some of your grandpa's story with me. I am sorry he went through so much. I cannot imagine everything he endured. I cannot imagine everything your family went through. I completely understand how his pneumonia was missed. It is absolutely heart-breaking that it took so long for him to get medical care.
I am so sorry to hear of your grandpa's passing. I am sure he was a really special person. i hope you are able to cherish the time you spent with him. May his memory be a blessing.
I agree. There are too many misconceptions about hospice, etc.
*Deepest condolences on your losses*
1) I wish his neuro doc would have looked into this further and spoken with a hospice rep and a palliative care rep, let alone other doctors!
2) I also think the hospice staff should have explored his wants/needs more thoroughly.
3) Sorry, but that was a sucky hospice nurse: that he/she missed the pneumonia repeatedly!
4) His passing would have come eventually, but it did NOT need to have been this way!! -I think that is one of the most damaging parts that deepens the grieving process: That it was NOT supposed to have been that way!!
I admire your strength and resilience in such a difficult situation. I wish you the best.
Thank you so much.
You are absolutely rite, you are making a difference. Your videos are very helpful and inspiring. I'm blessed not to need breathing support, but my baby does.
I'm grateful that instead of giving up, you made a choice to fight and to help us fight.
Thank you so much. I am glad my videos are helpful and inspiring.
yes, It felt wrong hitting like, but like her courage.
I think options vary from place to place but palliative care can sometimes be very similar to hospice. My daughter is followed by a palliative care team. They help us when we need to look at the pros and cons of different decisions. Some treatment options increase quantity of life while reducing quality. Some we think increase quality while reducing quantity. Some treatments increase both quality and quantity. Sometimes it can be hard to distinguish and quality means different things to different people.
Maybe a palliative care doctor can help you with some of your pain issues without the need for a hospice label? Pain medication should always be available to those who need it and you shouldnt have to give up life sustaining tx to recieve pain management.
Thank you so much for sharing. I really appreciate all the information and insight. I am glad your daughter has a palliative care team. It sounds as though they are quite helpful.
U have just entered reality for soooooo many ppl in pain
Well, I’m glad I caught the statement you made at the end of this video, which was much more positive than the video itself.
You had me worried to death for a minute there, because as far as I can tell, you look Great! and you don’t look like you’ll be needing anything like Hospice or Palliative care AT ALL!, You have many, Many! Great years ahead of you, if I may just sum it up (because I have my fatigue issues too), and say: You Go Girl ! ❤❤💐💐💐
Thank you for all your kindness and support. I really appreciate it.
My dad went home on hospice yesterday. He’s almost 91 with a bleeding disorder and advanced dementia. I struggled with palliative v hospice. This video was such a great help. Such a long, hard goodbye. My daddy really hasn’t been here in almost 7 years. Your positive attitude is really a godsend to patients and caregivers. I struggle as I also have responsibility for my completely disabled sister I don’t have to the day to day hands on care but keeping two households running and up on paperwork while working full time keeps me very busy.
Thank you so much for sharing some of your story with me. I am sorry you are going through so much. Your family is very blessed to have you. Thank you for all your kindness. All my best to you and your family.
Thank you for these videos. Please never lose that positive attitude you have. You have no idea how many people you have helped. God bless you.
Thank you so much.
My father in law was only on hospice for two weeks before passing from late stage dementia my dad was on hospice almost a year before passing my sister and a brother both passed from cancer both about two weeks all what made them go quickly was they give them a lot of morphine that keeps them knocked out and your right malnutrition I call it starvation all were under 100 pounds when passing. It’s sad because of the way people abuse pain meds people like my loved ones can’t get the meds they need until hospice and then it’s just to keep so much morphine in the so they stay unconscious until death not eating the whole time. It’s a jacked up society and system.
Thank you for sharing some of your story with me. I am so sorry you have been through so much. I cannot imagine everything you have endured. May your loved ones' memories be blessings.
I cannot believe you would not get to keep a ventilator ‼️ How inhumane! Thank you for informing us about these things!
Thank you for watching.
Never knew this about hospice care! You are educating the public!
Thank you.
My dad has Parkinsons, he developed aspiration phenemia now they want him to go hospice with no ventilator, no nutrition or water, what's your opinion please? They're telling me he won't feel any pain
@@liliacortes2801 Thank you for sharing some of your story with me. With no ventilator, no nutrition and no water, he will be dead in a week or less. If he was my dad, I would continue getting medical treatment and not go on hospice. I am so sorry you are going through so much.
@@LifewithaVent so agree with you!
Another great video. Thanks for makin it, most people have no idea that hospice not just accommodates the fatal, it can be fatal, this info needs to be out. Also, Happy Halloween!
Thank you so much. I appreciate your insight.
It's good to know these crucial things. I hope your weekend is going well. 💙💜
Thank you. Yes, it has been a good weekend.
My sister is a hospice nurse. Hospice is a wonderful program for people who are at end of life. Anyone who isn’t ready to die shouldn’t sign up for hospice care.
Thank you for sharing.
This is awful to hear. I’m so sorry to hear this as it really doesn’t make any sense! I would encourage you to reach out to your state representatives - they should know about this. I’m not sure if the MDA has any lobbyists in your state but I would see if you could get them involved as well. Also, thank you for posting about your conduction and all of the things you have/are going through. I worked with mitochondrial diseases and it’s amazing how these can affect people differently. I truly miss my ALS and MDA patients and helping them live the best life they possibly can. One of the best jobs I’ve ever had. Good luck to you and your wishing you all the best!!
Thank you so much. I appreciate the information. I will see if I can get my state representatives to take up an interest in this. Thank you for sharing about your patients. I am sure you were a favorite of theirs. Thank you for all your kindness.
Geez you rock that Passy-Muir valve!!!😮
Thank you.
Hospice told me they would not buy formula for feeding tubes as it's considered life support. My husband has severe dysphagia and would not be able to be alive for very long on hospice either. He is also on oxygen. Though low it keeps him pretty stable. I do think the air compressor humidifier he has cuts down on his ability to exhale (she has a video about cpap that she explains this)
The home health nurse we had for respite mentions hospice every time she comes over.
Thank you for sharing. I am sorry to hear about the challenges your husband faces. I am glad you know what will and will not be available on hospice care. All my best to you and your husband.
Oh dear girl, I feel so sorry for you😢, I admire you so much and wish things could be better
Thank you so much.
God has definitely given you a mission, and he is keeping you in existence.
You are so awesome and inspiring. Keep going and keep loving life and yourself. May God Bless you. Im keeping you in my prayers. Definitely, an attitude of gratitude is so the way to go. ❤🌹😍
Thank you so much. I appreciate your kindness and prayers.
I'm so sorry 😢 4:01 deepest condolences 🙏🏼
Thank you so much.
It's so hard to see her suffer like that from a cup of tea! Why can't people in pain get pain meds ?!😳
I'm so sorry she is dealing with so much!!!❤
Thank you for teaching us all the differences in Hospice Care. Wow it seems something’s need to change. If the person is in a certain condition why allow them to suffocate. Wow! That’s a terrible way to die even if you are on the way out in days like who’d want to not have the option of being able to breath, Thank you for your kindness to share your story. ♥️
Thank you for sharing. I appreciate the insight.
You’re so strong and thank you for sharing your story.
Thank you so much.
@@LifewithaVent Your welcome.
Wouldn't it be nice if there was a form of care in between hospice and general care for ppl with a chronic painful illness so you could have access to pain meds and similar care to ppl in hospice? Maybe one day as someone will put together something of the sort.Ppl in chronic pain deserve massages,pain medication,a lovely garden and someone to communicate with as well considering they can't do much and maybe be bed bound but not terminal 🤷🏻♀️
Thank you for sharing. Technically, there is a program called palliative care. In this program, a patient is supposed to have access to pain medicine. However, due to strict pain medicine prescribing laws and restrictions placed on pharmacies, many palliative care programs either do not prescribe pain medicine or only prescribe very low dose pain medicine. If pain medicine is prescribed, the patient may not be able to get the medicine from the pharmacy due to pain medicine distribution restrictions placed on the pharmacy. As I have been told (and other viewers have expressed to me), the general attitude in the medical community is if your have a chronic medical condition and need pain medicine, you need to go on hospice in order to have access to pain medicine.
More power to you ❤ May God Bless you (amen) .... You are an inspiration
Thank you. I appreciate your kindness.
That pancreatitis attack made me hurt… I hope this is very infrequent. Appreciate your outstanding outlook!
Thank you so much.
so many different variables to consider. i can totally see you rejecting hospice but others situations are each different. good talk. have a great day
Thank you for sharing.
I thougt hospice and palliative care goals were exactly to ease the suffering due to dispnea, malnutrition, vomiting, pain that do not respond to other treatments anymore.
Obviously palliative care cannot treat the cause, but try to ease these symptoms with different combinations of treatments, inclusing deep sedation, because patients are struggling mentally too, they cannot sleep, move, talk etc
Plus, palliative care and hospice doesn't meal terminal conditions/finals days.
They are made to help in cronic illnesses too.
This is because people doesn't know that palliative care or hospice doesn't mean end of life or they only provide relief to patients in their final days.
It means ease the suffering when nothing else is enough effective.
Thank you for sharing. I appreciate the insight. My apologies. I did not clarify in this video that the six months or less to live was hospice criteria for the USA. I sometimes forget my audience is international. If you do not live in the USA, then the criteria for hospice may be different.
In the USA, a person can only be enrolled in a hospice program if a medical provider believes the person has six months or less to live. As quoted from Cleveland Clinic: "Healthcare providers use Medicare guidelines to determine eligibility for hospice care. According to Medicare, you’re eligible for hospice if your life expectancy is six months or less if your illness were to run its natural course. Providers recommend hospice when treatments to cure your condition are no longer beneficial, and providers don’t expect your condition to improve." Here is the website if you wish to learn more about hospice in the USA: my.clevelandclinic.org/health/articles/21673-hospice
In hospice in the USA, a person cannot receive life extending medical intervention. In hospice, a person cannot receive dialysis, invasive ventilation, IV nutrition, and in some programs patients are also denied any form of ventilation (such as CPAP and BiPAP) and also no feeding tube formula.
In the USA, palliative care can be started at any time during a person's illness. Palliative care does not mean end of life. However, hospice care does mean a doctor believes a patient has six months or less to live.
If you would like more information about hospice versus palliative care, please see the following video: Hospice versus Palliative Care. What is the Difference: th-cam.com/video/Rt0nHFXDIFI/w-d-xo.html
Thank you for the informational video. You always inspire me with your positive attitude in light of your health situation. Have you considered doing a video on Palliative care? Would palliative care be something you would consider if you are faced with that decision in the future? I am so proud of you and wish you the best. One of your faithful followers and prayer folks-Take Care, God Bless Russ
Thank you for all your kind words. I have a video on hospice versus palliative care, but perhaps I should just do a video on palliative care. I have tried to go on palliative care, but it seems there are no palliative care doctors in my area. Thank you for all your support. I meant to respond to your email tonight, but I am out of energy. I hopefully will respond tomorrow. Have a great night.
That's okay when you feel up to it, always glad to hear from you God Bless
Thank you for your kindness.
Thank you for making your videos, and I am sorry for the burden*** that life has presented you with--not just medically, but also with the relative hardship of continually educating myself (and others!) on what life is like with a severe chronic illness.
I have type one diabetes, and though of course my disease hasn't required of me as much medical intervention to sustain myself, it is still something I would quickly (and painfully, I hear) die from within a matter of days without medication. I don't usually "appear" sick, so I run into a lot of (distasteful? ignorant? Occasionally cruel?) opinions from others on what makes a life worth living and what kind of life is worth living. Thank you for being so vocal and open with your life experiences and helping show others that life can have so much more meaning beyond just possessing perfect (or even just decent) health. Your advocacy helps all of us, even people like myself who are privileged enough to have a treatment available that allows me to almost live a "normal" life.
***I apologize if the term "burden" is inappropriate here. I just mean to say that I see your strength and drive in the face of responsibilities and care above and beyond "the norm," and I hope they do have a cure for your condition in the very, very near future so that you and others may enjoy more rest.
Thank you for sharing some of your story with me. "Burden" is a great word to describe what has been placed upon me. Thank you so much for sharing your insight. I appreciate your kindness. All my best to you.
Keeping you in my prayers. I hate seeing anyone suffer. I'm glad I will see you in heaven some day. You will be blessed for you suffering. Not sure why bad things happen to good people but I believe God has a reason and purpose. It must be so hard going through all these trials. I don't think I would have handled it as well as you.
Thank you so much.
You are and always will make a difference ✨️ thank you.
I appreciate your kindness.
@LifewithaVent i appreciate you 🙏
This is a deep conversation thank you much needed
Thank you for watching.
Comoared to so many other countries, the u.s could so much better for people( patients) with complex medical conditions and or cancer etc. I admire this patients resiliency and resistence to go on hospice. Perhaps she can go ob palliative care? My prayers to this brave patient. ❤❤❤
Thank you so much. I appreciate your insight.
Thank you for casting light on this condition!
Thank you for your kindness.
You are just amazing!❤🌹
Thank you.
Thank you for explaining hospice care .
Thank you for watching.
My heart broke for you during the pancreatitis attack episode.
Thank you for your kindness.
I won't go to hospice myself too.. I'd go for palliative care, but stay home with my family... I have medical marijuana which is good relief... 2:23 i do not know why is this like This..i got NG.. getting PEG soon..my reasons to not go to hospice is different thsn your reasons, may God bless us with all of us suffering from degenteive diseases.
Thank you so much for sharing.
Im very proud of you. I understand,i worked in nursing home my mom is in the nursing home and i believe in nda's for older people but i dont think that should mean no antibiotics or ivs. But alot of older people really want to go.
Thank you for sharing.
For those that are dying soon though hospice is amazing. For instance my dad had 2 weeks to live from cancer and hospice was amazing at letting him die a pain free peaceful death.
Thank you so much for sharing. I am so sorry to hear about your father. May his memory be a blessing.
Oh Lord Jesus, comfort this dear woman, and may she know You are always with her and for her. 'The joy of the Lord is my strength' (Nehemiah 8:10), 'My grace is sufficient for you, for My power is made perfect in weakness'(2 Corinthians 12:9)
His love and blessings.
Thank you so much. I appreciate the Scripture verses.
I saw that you were drinking some soup on other videos, I hope that you can eat occasionally at least. My heart is with you fighter ❤
Thank you so much. I try to drink liquids, but some days my pancreas does not tolerate liquids.
It seems what your explaining is hospice is end of life care, without things that would extend life, and being on a vent and/or feeding tube/tpn conflicts with that. Sorry to hear about your friend.
You seem to have a good attitude about your life.
Thank you for your sympathies, and thank you for your kind words.
You seem so happy while talking about suffocating to death at the end of the video.
Thank you for sharing.
Thanks for sharing. I wish there was a better option for your care.
Thank you so much.
Please know that not all hospices will deny your use of a vent or TPN. There are many out there that have additional support (usually donations from the community) that they can utilize. Usually these are nonprofit organizations. Please talk with the hospices near you to figure out if you can make this work. Also-you can always unenroll from hospice and decide to have a feeding tube placed or start a vent. Hospice care is evolving just like other care. Our idea of what end of life looks like is very different as new treatments or technologies are developed. I have worked as an ALS nurse clinician, a hospice nurse manager and now an oncology nurse clinician and know that things change over time - just like insurance will change what they cover. Hospice is a wonderful service that should absolutely be utilized as much as possible. Unfortunately many for-profit hospices are not looking out for the best situation for the patient and family and may be more about the bottom line $$.
Also-the best thing you can do is to ask. Ask your doctors, nurses, the hospices near you, national agencies, etc. Learn about the resources you have available to you in your area and nationally. Every situation, every condition, every family/support, every business is different. Please advocate for yourselves or loved ones.
Thank you so much for sharing. What great insight.
You mentioned you worked as an ALS nurse clinician and hospice nurse manager. May I ask, did you ever have ALS patients go on hospice who had a tracheostomy tube and ventilator? I ask because the ALS group in my region has been unsuccessful at getting any hospice program to accept an ALS patient who has a tracheostomy tube and ventilator unless the patient/family agrees to disconnect the patient form his ventilator. I was wondering if you knew of any hospice program which accepts patients with tracheostomy tubes and ventilators and allows them to continue using them while on hospice. If you do, please share the name(s) of the companies so I can pass it along to the group. Thanks so much.
I do know these companies are out there and have absolutely had patients who have not had to have a “disconnect” date for people with trachs and vents. I think a lot of it comes down to finding a non-profit hospice that is willing to work with the ALS team about what is expected for length of life for that specific patient (having the neuromuscular specialist or pulmonologist call the hospice director to talk directly can help). We now know that living with a vent with ALS is not always (and really rarely is) infinite. Muscle weakness continues to occur and sometimes vent power can’t overcome come this weakness or “stiffness” of the thoracic wall. And, as patients live longer, we are beginning to see more and more cognitive dysfunction and/or frontotemporal dementia (no longer can we say that ALS doesn’t affect your cognition or personality). And, sometime patients or families are exhausted and no longer have the drive or energy to keep going but aren’t sure when they want to stop. Having goals of care conversations with patients and families is extremely important and why it is essential people get hooked up with a multidisciplinary, specialized clinic. I live in the Midwest and have some great hospice companies to work with but it takes a lot of time and good communication with clinics and these agencies. As new technology comes into play (i.e. moving from cpap to BiPAP to AVAPS) I had to have a lot of conversations with hospices about how this more expensive tech actually helps with quality of life - not just quantity of life - and that is and should be the real goal of end of life care. Some places aren’t willing to consider this but more and more are. It’s also really helpful to have a medical team willing to advocate and help fight for patient rights. If you don’t have that, it can be hard to “fight”the system. I would advise the patients in your area to reach out to their medical teams and also try to connect with national groups like ALSA or MDA to help them with this as well. Thanks for your questions. The more education we can get out to everyone the better lives people can live-no matter the diagnosis or time people have left! Thank you!
@@erinspringer9944 Thank you so much for the information. I appreciate all the insight. I will continue to search.
The ALSA has tried to help, but they have not been able to locate any hospice programs which allow trach and vented patients in our region. Also, the MDA does not have any suggestions. My medical condition is under MDA. The MDA program I work with does not place their patients on hospice because they have had their patients disconnected from their vents.
I have also learned, some insurance companies will not pay for hospice if the patient has a trach and vent, and the patient continues on the vent while in hospice. One person in Washington state has been informed it is state law that if a person with a trach and vent enters hospice, he/she must be disconnected from the vent as soon as hospice services commence. I have not been able to find any laws, but Washington state's law may also be in effect in my state, and that may be why no hospice program will take trach and vented patients unless the patient/family agrees to disconnect from the vent.
Not the experience we had with my mother when she went on Hospice. They could not have been better. Nurses came often to help with personal care. She was never short of pain medicine, and we never paid a cent for any of it, for her oxygen or her hospital bed. She did not die within days, either. They provided everything she needed and checked with us constantly to see if she was getting low on anything she needed. Pads, gloves, bathing wipes, all of it. We had 24-hour access to our certain nurses and hospice workers. We had two supervisors who visited at least once a week to see how we were doing, to see if how my mother looked and making sure that everything that could possibly be done for her was being done. We had the offer of a counselor and spiritual support as well.
I can’t praise them enough? They were with us constantly in her last few days.
Thank you so much for sharing. I am glad it was a positive experience. I am so to hear of the passing of your mother. May her memory be a blessing.
After my husband had a mild stroke, hospice nurses began coming to our home. They wanted to give him pain medicine (Codine). He told them he was not in pain and would not take it. I realized what they were up to and got rid of them. I have no idea who sent Hospice unless it was his private doctor. A hospice nurse told me that it was a wonderful thing to watch people die. I dispise hospice and social workers more than anything. ANGELS of DEATH !
@@foggybrow2 Thank you for sharing some of your story with me. I am sorry that happened. However, I am so happy you recognized what they were trying to do. Kudos to you.
This doesn't happen in paediatric hospice care in UK.
Thank you for sharing.
Thank you for your advocacy
Thank you for watching.
Hello! , I have a few questions, my relative is on a ventilator and at the hospital ward they use a transportation ventilator and I am not sure if that’s okay to be used for a long period of time ( 1 month ) and it would be great if you would recommend home ventilators. Thank you so much! ❤❤
Hello. Thank you for sharing. Transportation ventilators can be used for a long period of time. Please make sure the ventilator is connected to a heated humidifier. A heated humidifier is important to prevent the airways from drying out. Home ventilators: Trilogy 100, Trilogy Evo, ResMed Astral, Movair Luisa, Newport HT70 plus, Breas Vivo, etc. There are many home ventilators. The hospital should know which ventilators are available in your area.
@@LifewithaVent Thank you for replying 🥰🥰 this is really helpful ❤️❤️
@@2kool4skool66 You are welcome. I am glad it was helpful.
You need to talk to @Nurse Hadley. I think you have a lot of misinformation because this is would be a lot of agreements in place for this to occur. Also the hospice placement would have to have everyone’s sign off. You’re a competent person.
Thank you so much. That would be great if I could talk to Nurse Hadley. Please feel free to pass along my contact information and/or channel to her.
It is not true that a doctor must say a person has 6 months or less to live in order to go on hospice. All a patient has to do is refuse to go to a hospital. My brother had no terminal illness but was tired of going to the hospital, so he went on hospice, which was the best option for him. Also, patients can come off of hospice at any time and go back on. A neighbor found out that hospice was a godsend to him and kept him comfortable. The nurse is available 24/7 and knows exactly what to do.
Thank you for sharing. I appreciate the insight. I do not know which country your brother lived in. So it is possible your brother was on hospice if he did not live in the USA. Different countries have different criteria for hospice eligibility. (My apologies. I did not clarify in this video that the six months or less to live was hospice criteria for the USA. I sometimes forget my audience is international.)
In the USA, a person can only be enrolled in a hospice program if a medical provider believes the person has six months or less to live. As quoted from Cleveland Clinic: "Healthcare providers use Medicare guidelines to determine eligibility for hospice care. According to Medicare, you’re eligible for hospice if your life expectancy is six months or less if your illness were to run its natural course. Providers recommend hospice when treatments to cure your condition are no longer beneficial, and providers don’t expect your condition to improve." Here is the website if you wish to learn more about hospice in the USA: my.clevelandclinic.org/health/articles/21673-hospice
If your brother lived in the USA, it is possible a doctor may have certified he had six months or less to live in order to qualify for hospice. If no doctor certified he had six months or less to live, your brother was most likely not on hospice. He may have been on palliative care. (Many people often call palliative care hospice, but they are different programs with different eligibility criteria, but they both aim to provide comfort care to the patient. In palliative care, a person can choose to forgo any additional testing or treatment for his medical issues.)
Thank you for your reply. Yes, my brother was told by his physician in NY that he was eligible for hospice if he refused to go to the hospital. He then moved to GA into an assisted living community and was again told he could go on hospice by refusing to go to the hospital, so he finally did it, which worked beautifully for him and the family. It was not palliative care. It was definitely hospice.
What about palliative care?
Thank you for the information. I will look into palliative care.
Thanks for sharing. ❤
Thank you for watching.
have you tried raw meat diet?
No I have not.
Thank you for sharing your thoughts and insights! You help with understanding, thanks! You are making a difference!
Thank you so much.
Pancreatic attacks are worse than anything I’ve ever experienced! It was worse than my baby flipping over while I was in hard labour, it was worse than all 3 of my hard labour 20 hr pregnancy labours ! I would beg for death in my head!! It was just an evil insane pain.. it’s scary that such pain is even possible in human beings!!
Thank you for sharing. I am so sorry you have gone through so much. I cannot imagine everything you have endured. I appreciate all your insight. All my best to you.
@ Oh wow! What a beautiful treat! I never expect a response so thank you from the bottom of my heart!❤️ You are such an amazing inspiring person, I pray you have health and happiness all your life!❤️❤️❤️
@@West-rn-showvn-ist-chick Thank you so much. I appreciate your kindness.
I understand your concerns about dying a painful death from suffocation. But as I understand it, when you are on hospice with severe respiratory problems, they will put you on high doses of morphine to prevent that air hunger. The effects on your body from hypoxia will still happen, but the suffering will be mitigated.
Thank you for the insight and information.
Thank you for the information I was u aware
I am glad it was helpful.
The rules for prescribing pain medication are because of drugs users. in terms of drugs, the new generation of opiods were much stronger than anything before. Even pharmacies have been shut down because they fulfilled too many prescriptions.
Thank you for sharing. I appreciate the insight.
Well if one is dying anyway what’s the fear of a slightly hastened death? Hospice is a far better way to go than in a hospital struggling till your very last second. And if one is scared of a ventilator exactly what does one think will happen in a hospital ICU setting? I would never ever recommend hospital care over hospice care unless one simply wants to suffer more deeply while slightly delaying the inevitable smh. Plus to try and convince others hospice is bad is dangerous rhetoric and could cause other people harm. And one doesn’t have to accept any kind of nutritional intervention on hospice; they never have had to. I’ve never seen hospice force anything on anyone. But I do resent it when I see people trying to convince other people hospice is bad when I’ve seen it save so many people from horrible end stage diseases and painful deaths.
I don’t think having all the information is dangerous and fearing death is a natural thing plus she stated that hospice is a good option for some.
"But I do resent it when I see people trying to convince other people hospice is bad"
Yet you're doing that very same thing in reverse.
"Horrible" is a subjective opinion and not an objective fact. Educated guesses are not progressions written in stone.
I worked with an elderly woman that had a stroke. She was bed bound in a flaccid state and could only move her head. She could eat and swallow and gibberish talk just a little. She was like that for 6 yrs before she passed away. Sure, hospice could have hastened the end of life for her, but that would have been 6 yrs without the blessing of having the love of her family.
My own husband has a similar situation. He had an undiagnosed aneurysm rupture. We were only married a month when he went down. We have, so far, had 18 months of him knowing how much I love him.
My mom had lung cancer. She went 15 yrs before covid took her out. Hastened death would have robbed these people of the love of their families. My mom got married in the interim.. she found love as a cancer patient.
I believe people need love at end of life.. not overdosed on morphine
@autumnwilliams7215
Thank you for sharing. I am a little confused by your comment.
I am not trying to convince others hospice care is bad. I am simply sharing why I would never go on hospice. It is important people who are using life support (whether that is a ventilator or IV nutrition) know and understand that hospice care will end access to these services. I believe people should be well aware of what they are getting into when signing up for hospice. Unfortunately, hospice care is a HUGE money making industry, and the drive to sign people up for hospice is enormous. Hospice programs may not relay all information to patients and/or their families in order to get the patient signed up in the hospice program. My hope in creating this video is to help spread awareness and to encourage people to discuss this topic.
@@LifeAfterSAHStroke My 90-year-old father had a massive stroke last October, and within hours of admission was readmitted to Hospice, where he died peacefully 4 days later. Nothing could be done for him, so he was kept comfortable until the end. That's what he would have wanted. Goodbye, Daddy.
Try Palliative care.
Thank you for sharing.
Nice video
Thank you.
If you sustain your life with TPN and a ventilator that’s your choice, why you cast Hospice in a negative light is beyond me.
Thank you for sharing.
I feel as though she presented hospice in a neutral (objective) way. She’s comparing hospice to non hospice measures for those who may be living with a chronic condition.
@@lauraa2778 Thank you for sharing.
I don't think it's meant to be negative she's simply passing on information that she was given in some way. The information in this video does not always apply it seems. Each individual should do their own research and make sure any hospice or other home care program will fit with their needs and desires for care.
@@crystald3655 Excellent points. Thank you for sharing.
Girl, you are much too lively for Hospice. I am a Hospice nurse. We've only discontinued TPN in one cancer patient who made the choice to stop life-prolonging treatment, and realized he was only feeding his cancer. None of the nourishment went to his body: all to his tumour. Yes, you have a complicated health situation, but you are definitely not ready for Hospice yet.
I've also had several patients that doctors told them they could only go home on hospice because of 1. as you said: Need for pain medications, 2. They needed supplemental oxygen, and perhaps some in-home care. -Not all physicians are well-versed on hospice criteria.
When the time comes, and it is determined that if the disease process were to take it's natural course without medical intervention, that death would most likely ensue withing six months (average), then the decision is made, by the patient, physician(s), medical team, family, etc. to go on hospice. Not everyone has to. It is a very individual choice.
Thank you so much for sharing. I appreciate the insight. What great information.
@@LifewithaVent There are so many misconceptions about hospice. I had one really great experience when going to an assisted living facility to provide into to the residents. An older gentleman in a mobility scooter greeted me at the door. He introduced himself, and asked me my name. Then he asked what kind of nurse I was. I told him. He replied, "No offense Ma'am, but I hope I never see you again!" -He made my day.
I really hope you're doing better. I've seen some of your updates. Wishing you the very best!
@@TDS.Harper Thank you for sharing. What a wonderful story...and what a perfect response by the gentleman. Thank you for all your kindness.
Your medical issues are insane. Pancreatitis is awful. I hope you have good support in person. You could really educate lots of medical professionals xx
Thank you. I appreciate your kindness.
Sounds horrible that you can't keep your nutrision. Why can't you get pain medicin since you are very sick? i'm a nurse in sweden and of course you would get everything you need here. It makes me very sad and upset. ♥
Thank you for your question. Pain medicine in the USA is tightly regulated. There are many laws regarding pain medicine. Also, doctors get their medical licenses taken away if they prescribe too much pain medicine. Most of my doctors do not prescribe pain medicine to protect themselves from facing legal action and losing their medical licenses.
Jesus Christ keeps you alive, and l believe strongly that by God's grace you will be healed miraculously for God's glory to be revealed
Thank you.
All praises for Allah= Alhamdolillah
Thankyou for the effort
Thank you.
Hospice is for people who have elected to forge aggressive or curative care. It’s fine that you aren’t there yet, but it is the right thing for many people. It doesn’t mean hospice is bad. It’s just not for you.
Thank you for sharing.
I think you should have pain meds. Try to find a doctor that is ready to retire. IT a shame that you have to fight for pain meds. keep the faith GOD IS LOVE
Thank you. I appreciate the insight.
Incredible inspirational person.
Thank you. I appreciate your kindness.
@@LifewithaVent I don't know if this is something too personal for you to answer, but (I am Jewish) I notice here and there hints that you may have some kind of Jewish connection. I know you are a very deeply spiritual person, and I greatly admire that. It's spiritually uplifting and a true inspiration to watch how you look at every aspect of life as a blessing no matter how difficult life gets for you, no matter how many obstacles have been put before you. You come back with gratitude and love. Your spiritual power is highly unusual and rare. Your life has deep meaning and you have touched many many lives.
@emet744 Thank you so much. I really appreciate your kindness.
That sounds like murder, I mean if the patient wants the support from hospice car but still live as long as possible, that they can just take away something like a ventilator. I didn't know it was like this, horrifying.
Thank you for sharing. I am glad the video was insightful.
You in pain is very hard to watch. I wish you get a better treatment plan.
Thank you.
I want to encourage you to consider palliative care for pain control because you are in that awkward spot of being insanely high maintenance and subsisting on that high maintenance. I'm not being mean, there were conversations had about sending me for terminal sedation but a hail Mary surgery bought me time. Palliative care made suffering this in between living and dying easier which made fighting to stay alive doable.
Thank you so much for sharing. I appreciate all the insight. I am sorry you have been through so much. All my best to you.
Cancer you can get it..
Thank you for sharing.
I’ve been in TH-cam jail twice this week, so I’ll type this in an odd way…….
Hospice keels people
Thank you for sharing. I had no idea TH-cam had that. I have heard of people on FB going to the unwanted place of confinement, but I did not know TH-cam had such a place. I appreciate you taking a risk to leave me a comment. That means a lot to me. All my best to you.
Not at all. Hospice is to assist the already dying in that process and prevent suffering. Please do in depth research before commenting such things.
It's hard in the US to get pain meds? Girl, USA is synonymous w opioid overprescription lmfao
Thank you for sharing. Are you familiar with the CDC's 2016 opioid guidelines in which doctors face criminal prosecution for prescribing pain medicine? If you are unfamiliar with the CDC's rules, here is a brief overview: Many have struggled to get opioid prescriptions written and filled since 2016 guidelines from the Centers for Disease Control and Prevention inspired laws cracking down on doctor and pharmacy practices. The CDC recently updated those recommendations to try to ease their impact, but doctors, patients, researchers, and advocates say the damage is done.
“We had a massive opioid problem that needed to be rectified,” said Antonio Ciaccia, president of 3 Axis Advisors, a consulting firm that analyzes prescription drug pricing. “But the federal crackdowns and guidelines have created collateral damage: patients left high and dry.”
Born of an effort to fight the nation’s overdose crisis, the guidance led to legal restrictions on doctors’ ability to prescribe painkillers. The recommendations left many patients grappling with the mental and physical health consequences of rapid dose tapering or abruptly stopping medication they’d been taking for years, which carries risks of withdrawal, depression, anxiety, and even suicide.
Source: www.cnn.com/2023/03/17/health/opioid-chronic-pain-cdc-guidelines-khn-partner/index.html
Furthermore, many healthcare providers have been persecuted for legally prescribing pain medicine.
Here is an except from an article written by a healthcare provider:
The CDC claimed - without supporting references from the medical literature - that a threshold of diminishing benefits exists for opioid doses above a 120-morphine-milligram-equivalent daily dose. They also recommend non-pharmacological, non-invasive therapies as “preferable” to opioids, despite the fact that no body of validated trials data demonstrates any such benefit. The message between the lines of the CDC guidelines is “doctors who prescribe opioids do so at their own risk - and the slightest error on your part in a hostile regulatory environment can put you in jail.”
As a health care writer and advocate for people in pain, I communicate with patients and clinicians every week. What I see is that pain medicine in the U.S. is failing both patients and clinicians, largely due to the CDC’s faulty narrative and the DEA’s harassment and prosecution of clinicians for legally and ethically prescribing opioid painkillers to their patients. The result? Millions of Americans living with severe chronic pain are being denied safe and effective pain management with prescription opioids, deserted by doctors afraid of being targeted and persecuted by DEA and state medical boards.
Source: www.statnews.com/2024/07/11/doctors-overprescribing-opioids-didnt-cause-overdose-epidemic/?fbclid=IwY2xjawG0ej5leHRuA2FlbQIxMAABHQHVQgwmN6mbA7tupGOtZfMeJwdNEyRGZThKXU76ld4Mu_-Aib2ZajMsDg_aem_t4IKs_BN6HNSc_7O5CJeFQ
Have you tried to get pain medicine in the last years? If you have not, please try to do so. When you try to get pain medicine, please share your experience here. Oh, did you also know many pharmacies have restrictions on the amount of opioids they receive? So even if you get a prescription for pain medicine, there is a chance you will not be able to get it filled at the pharmacy.
The reason it's hard to get pain meds in the US is that opioids were overprescribed for many years (for profit). Many drug addicts were created. Now harsh rules are in place to stop the overprescribing of pain meds.
Hospice sounds terrible. A definite place of death.
Thank you for the insight.
@ Sorry, I meant for anyone. Iv heard of it but I didn’t know what it was actually like. It’s literally a death trap.
Why are you talking like that?! 👀 and your pronunciation is weird, too 😬👀
When on a ventilator it is difficult to speak and breathe at the same time. She speaks well considering that.
Thank you for sharing.
@@carolehamm1674 ohh I see. Thank you for clarifying that! 🙂
You are and always will make a difference ✨️ thank you.
Thank you so much.