Why I Will NEVER Go on Hospice IV Nutrition (TPN), Ventilator & Tracheostomy Tube. Life with a Vent
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- Опубликовано: 21 окт 2024
- Hospice care is often touted as a great choice for end of life care. However, many people do not know there are many restrictions to medical care and services, which could severely impact the patient and even kill the patient. For me, hospice would be a horrible option and would be a guarantee I would be dead in a week. #lifewithavent #hospice #trach
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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.
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.
I admire your strength and resilience in such a difficult situation. I wish you the best.
Thank you so much.
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.
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.
This is a deep conversation thank you much needed
Thank you for watching.
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.
It's good to know these crucial things. I hope your weekend is going well. 💙💜
Thank you. Yes, it has been a good weekend.
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.
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 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: ruclips.net/video/Rt0nHFXDIFI/видео.html
Thank you for casting light on this condition!
Thank you for 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.
You’re so strong and thank you for sharing your story.
Thank you so much.
@@LifewithaVent Your welcome.
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.
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.
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.
Geez you rock that Passy-Muir valve!!!😮
Thank 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. ❤❤❤
Thank you so much. I appreciate your insight.
I'm so sorry 😢 4:01 deepest condolences 🙏🏼
Thank you so much.
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.
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.
Thanks for sharing. I wish there was a better option for your care.
Thank you so much.
Thank you for the information I was u aware
I am glad it was helpful.
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.
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.
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.
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.
What about palliative care?
Thank you for the information. I will look into palliative care.
Thank you for sharing your thoughts and insights! You help with understanding, thanks! You are making a difference!
Thank you so much.
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.
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.
Try Palliative care.
Thank you for sharing.
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.
Nice video
Thank you.
Good topic to talk about just do it by talking normal...🙄
Thank you for watching.
Her medical apparatus affects breathing/ speech.
@@cynthiaholland13 Thank you for explaining. I appreciate that.
Cancer you can get it..
Thank you for sharing.
I’ve been in RUclips jail twice this week, so I’ll type this in an odd way…….
Hospice keels people
Thank you for sharing. I had no idea RUclips had that. I have heard of people on FB going to the unwanted place of confinement, but I did not know RUclips 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.
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! 🙂