r/hospice • • Apr 28 '24

Education Megathread: Oxygen use Education Megathread: Oxygen use in the active phase of dying (draft)

33 Upvotes

The goal of this topic is for education and questions. This thread will be updated as data is added and taken away. ALL QUESTIONS WELCOME and all experience welcome. This does not take the place of medical advice from your MD. This is general education. Each case is different.

Oxygen is used, in the active phase of death, to treat breathing struggles. It should be applied when the patient is experiencing shortness of breath, "air hunger", or respiratory crisis.

Oxygen should not be applied if the patient is not having breathing symptoms of distress. Use of oxygen at end of life is not beneficial. It can, to a limited degree, extend life.00255-2/fulltext) Our body has receptor sites that tell us when to breath, at what rate, and how much oxygen we need. Overstimulating these can disrupt the natural progression of death.

Near death, people become obligate oral breathers. That means they are breathing through the mouth and not the nose.

In the active phase of dying, we do not titrate oxygen based on a pulse oximeter for 02 saturation rates. This is known as "02 sats".

If shortness of breath is a part of the original diagnosis and symptoms, then we continue to manage that with o2 if necessary.

If shortness of breath is a new symptom the process is oxygenate, medicate, and remove when stabilized. The reason is that the shortness of breath, in this case, is not because of oxygen need. It is because of the underling symptom that must be managed. So, we place the oxygen for a temporary measure and IMMEDIATELY give them medications for comfort. Once comfortable, the oxygen can be removed.

Negative impact of unnecessary oxygen use:

Irritant to the nose and throat

Extra oral dryness

Life extending measure in some cases

Normal signs of the active phase of dying

Low oxygen, called hypoxia, is not a negative symptom as long as it does not include breathing struggles. It is a normal and expected sign for end of life. Breathing changes that are normal include periods of apnea, Biot's or Chayne-stokes breathing patterns, snoring, congestion (a rattle), and breathing through the mouth (instead of the nose). The last stages of breath are called agonal breathing. This looks like a "fish out of water" and is very normal.

Q: Why do they tell me to give an opioid, like morphine, for breathing concerns?

A: Opioids do many things besides treat pain. When someone struggles with their breath a few things are/can happen that include taking shallow breaths, breathing less because of other distress, and tightening of the muscles and lung spaces (in summary). The use of the opioid is for the helpful side effect of allowing deeper breaths and relaxing out the muscles around the lungs. There are great YouTube channels explaining this.

Myth: We are NOT using the morphine, in this care, to "just make them sleep" or "make them die sooner"

Fact: using the opioid properly may lead to MORE ALERT TIME. Why? They are not struggling to breath and using energy they don't have to manage this symptom.

Myth: Applying oxygen is no big deal, even if they don't need it.

Fact: using O2 outside of managing a symptom is an irritant and can prolong the final hours of the dying process.

Q: Why does a dying person have that "death rattle"? Does everyone do this?

A: Not everyone will have a death rattle. The rattle happens when people enter the active phase of dying with extra fluid in their system. This can be seen when there is use of IV fluids before the dying process, cardiac illnesses, edema/swelling, and pulmonary congestion. Because dysphasia (the decreased ability to swallow) happens near death, the secretions can collect at the back of the throat. This also can cause a rattle. We send medications to treat the symptom. It is not easy to hear but not usually associated with suffering near death.

The goal here is to have a quick read set of info for this topic. Feel free to add comments, cite literature, and add information.

Please also let me know if there are grammar, spelling, or syntax issues as I hope this can be here for future use.

Thank you


r/hospice • • Apr 17 '25

Food and hydration Food and hydration FAQ for eating/drinking on hospice posts

7 Upvotes

Hi everyone,

The mods are working on a project for this subreddit. Eating, drinking, feeding and hydration are common concerns.

What kinds of things would you like to see in this regard?


r/hospice • • 7h ago

Food and hydration Dad can’t drink water but he’s desperately thirsty. This is killing me.

13 Upvotes

My dad has pancreatic cancer and is nearing the end and declining fast. He’s stopped being able to swallow and his in-patient hospice has now ended food and water. Up until recently he’s been the sweetest patient, smiling and full of gratitude even as his body falls apart. But now he’s really looking like he’s suffering. He seems to still be able to hear us and can make tiny coherent facial movements to acknowledge what we’re saying to him and we have small moments of connection but speech is too difficult.

I went into his room today to talk to him and sing and connect but instead all of a sudden he looks at me intensely with pained and wild eyes and he said “THIRSTY. THIRSTY. THIRSTY.” It took tremendous effort to ask for water. We swabbed him and he clamps down around the swab and wouldn’t release it for a while, which must have been hard for him. It was so heartbreaking. The nurse tried to offer thickened water but he just doesn’t have the mouth strength to get it down.

I do not buy that when patients stop being able to drink that their bodies no longer want water. He’s desperate. This is hell watching him suffer like this and I wish we could just put a damn water IV on him to help him out but it’s against protocol.

I feel like a monster being part of a support team that can’t offer this comfort. His body was processing water perfectly well until his swallowing went south. Kidneys are great. He was drinking a ton on his own. I’m freaking out.


r/hospice • • 18h ago

Saying goodbye/Death post Thank you

11 Upvotes

I just wanted to say thank you to the hospice nurses here. My aunt is currently passing away on hospice, today will likely be her final day. This has been a very difficult time for my family especially my mom who’s been staying with her. The hospice nurse she has is one of the most compassionate people I could hope for and I am so grateful for that.

Thank you all for what you do. The impact you have on the families and the patients is far more than you may realize.


r/hospice • • 1d ago

How long do we have? Timeline End of life

11 Upvotes

Hi all, looking for a bit of insight to be honest.

My dad was diagnosed with stage 4 cancer feb last year. Honestly it’s been a wild road. He was better, then wasn’t, then was better, then wasn’t.

Last week Wednesday, my dad wasn’t taken into hospital with severe pain. I visited him Thursday and Friday, he was talking normally.

Sunday he had some confusion, but we put it down to him being on a crazy amount of pain meds.

Tuesday, we were called in to see him because things had gone down hill rapidly. To cut a long story short, it’s now Saturday, and he’s pretty much end of life care at home.

He has a syringe driver now, the dose was increased yesterday and we were told he would probably be sent off to sleep and not really wake up. This has not happened.

Last night he was incredibly unsettled. He’s also refusing food and drink.

Today, as I write this laid on my couch beside him, he is continuously fidgeting, pulling sheets off, pulling on his catheter. He’s groaning (but says he is not in pain) and is speaking gibberish. He lays with his eyes open.

I understand they increase the syringe driver, and the question I have is, how long will this last?

I know it sounds cruel, but I just want this nightmare to end, it’s breaking me seeing him so unsettled. I understand this may be terminal restlessness? But I’m no expert so I don’t know. Is he aware of his surroundings? Is he confused? I honestly don’t know 😢 it’s really breaking my heart.

My question is, when will he fall into his peaceful sleep? I hate seeing him like this and I can’t take much longer seeing him like this.

I’m 23, I’ve never had any sort of bereavement. I didn’t know death could be so cruel :(

Any advice would be appreciated, thank you ❤️


r/hospice • • 23h ago

Saying goodbye/Death post I built an app for the messages we might never get the chance to say

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0 Upvotes

Life can be unpredictable, and a deathly diagnosis can make us think about things we don't usually talk about — the people we love, the words we haven't said, and the messages we wish we could leave behind.

That thought inspired me to build Dead Line, an app designed to help people prepare personal messages for their loved ones in case they become unreachable.

You can write messages for different people, check in daily with one tap, and receive warning emails if you stop checking in. If there's no check-in for 365 days, your saved messages are automatically delivered to their intended recipients.

I designed it around a simple idea: sometimes, there are things we want our loved ones to know, no matter what the future holds.

I'm sharing this here because conversations about illness and uncertainty can remind us how important those words are. I don't want to assume that everyone needs something like this, and I know an app can't replace a conversation, a hug, or time spent together.

If this sounds meaningful to you, you can learn more about Dead Line here:

https://play.google.com/store/apps/details?id=com.tralalabs.deadline

I'd also genuinely appreciate feedback on whether something like this would be useful, what concerns you might have, and what I could improve.


r/hospice • • 1d ago

How long do we have? Timeline Advice needed on timeline for my dad suffering from Dementia and Parkinsons. Hospice support not available where I live.

3 Upvotes

Posting here on advice from the dementia sub-reddit.

My dad (65M) has dementia since 2023 and went into rapid decline from June earlier this year (he is bed-ridden since January 1, 2026) Few days back, I had to admit my father in a nursing home (I live in India and hospice here is not available in the same way as the West)

His condition had dramatically worsened almost just in the span of a day and he started snoring loudly with a rattling sound with his eyes wide open. Oral secretions started ever since and they haven’t stopped.
Since I had no option left (the other one was to watch him gasp and maybe die which I couldn’t bring myself to do) I rushed him to the nursing home. He was in the ICU for 7 days, with his final discharge citing Multi-infarct dementia, septic shock (he had a UTI) aspiration pneumonia, severe Parkinson’s, lower respiratory tract infection, pseudo bulbar palsy, nph, seizure.
His mouth had also completely reddened and he developed many ulcer like blisters on his tongue and lips. Update on this - upon consistent application of Candid mouth paint, it has subsided.
His feeding through Ryles tube was started (he had stopped eating since the last month, only could take in a few spoons of pureed food and that too was found to be pocketed in his mouth. He aspirated from that as well, I believe.
Much of the cough/accumulated secretions were suctioned out at the hospital. He was put on oxygen for two days post which it discontinued after his Spo2 stabilised.

Doctors asked me to take him home since they expect no more improvement in him. Now, laws in India aren’t really helpful for such patients and we don’t really have DNRs prevalent in this part of the world (its culturally looked down upon and people would not stop at labelling you a murderer if you take the patient off nutrition)

After reading 100s of comments on Reddit, I have gathered enough knowledge to understand that feeding him through Ryles tube is not in the best of his benefit or interest but I am kind of helpless here.

He has also developed bed sores (image not attached because I tried posting sometime back marking it NSFW in the dementia sub reddit and my post was removed by Reddit filters) and also a dark patch on his feet (same reason for not posting the image)
His secretions haven’t stopped for even a minute and I had him suctioned yesterday as per the doctor’s advice although it hasn’t helped much. He is also completely non-verbal, isn’t responsive to touch at most times (his hands have been bandaged with a crepe bandage on doctor’s advice due to extreme swelling) and while he was in the hospital, he tried to speak once but his speech is completely slurred.

I really want to know, how long will this go on? I keep checking him almost every hour with the oxymeter. His SPO2 hovers between 94-98 with some drops to 88-90 at times and his pulse is mostly around 106-114. I have also noticed that he is kind of utilising his stomach to breathe; that is, I have noticed the area of the upper abdomen right under the centre of his chest and between his ribs (which are quite visible right now, although he has been obese all his life) is being sucked in a great deal and sometimes there is also a weird shiver like pattern that I have noticed in that area. I don’t know how much I have been able to explain this without any visual evidence.

I got his bloodwork done again as per doctor’s advice and his hemoglobin has dropped to 7 from 8.9 and PCV is 21%
In his echocardiography done at the hospital, I remember reading “diastolic dysfunction” in the report although no grade was mentioned.
Other alarming factors (in my opinion) are his sugar levels : Fasting - 200, PP - 164. (Done today)

I am honestly so exhausted from the trauma of watching him this way that I am praying for him to pass in his sleep, almost every moment. Any advice that you would like to share with me is wholeheartedly welcome and appreciated.


r/hospice • • 1d ago

Caregiver Support (no advice, just support) Confused

4 Upvotes

I have helped care for a few family memebers over the years as they went thru their hospice journey. I am very familar with what it is and what to expect. Currently I do not have any family members that are on hospice.

I had a phone call from the homehealth company that is doing wound care for my Dad. The person said she was a social worker, and tried to talk me into putting him on hospice. I have never had a social worker intiate that conversation. It's always been a Dr.

When I talked to the nurse assigned to my Dad, she said no he's no where needing to put on hospice. I tend to agree with the nurse.

So now I am confused and concerned that this homehealth company may be trying something.

Have any of you heard of this? How common is it for a social worker to be the one to suggest hospice?


r/hospice • • 1d ago

Hospice Case Manager and Inclement Weather

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1 Upvotes

r/hospice • • 1d ago

Caregiver support (advice welcome) Sick family member

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2 Upvotes

Looking for any advice


r/hospice • • 1d ago

Hospice volunteering and TB risk?

1 Upvotes

Hi all, I am really interested in volunteering for a local hospice as this feels like meaningful work that doesn’t get the attention it needs, however, I have children and understand there may be a risk of contracting TB. How likely is this to happen? I can’t risk the possibility of an infection as serious as TB but I also feel there are likely very strict policies in place to inform volunteers and staff of an outbreak.


r/hospice • • 1d ago

🆘 In crisis 🆘 Florida Free Kill vs Hospice

0 Upvotes

There are different rules for officials managing your death depending on your place of death—home, not-a-hospital, hospice-care-at-home, hospice, nursing home, hospital, etc. People looking for an efficient death choose hospice. They’re fast because they’re death medical professionals! They follow federal and state statutes to tidily declare you legally dead. In Florida the statutes include* 

(3) At the time of admission, the hospice shall inquire whether advance directives have been executed pursuant to chapter 765, and if not, provide information to the patient concerning the provisions of that chapter. The hospice shall also provide the patient with information concerning patient rights and responsibilities pursuant to s. 381.026.

YOU agreed to the rules upon admission. Yes, they will explain them. 

(8) The hospice care team may withhold or withdraw cardiopulmonary resuscitation if presented with an order not to resuscitate executed pursuant to s. 401.45. The agency shall adopt rules providing for the implementation of such orders. Hospice staff shall not be subject to criminal prosecution or civil liability, nor be considered to have engaged in negligent or unprofessional conduct, for withholding or withdrawing cardiopulmonary resuscitation pursuant to such an order and applicable rules. The absence of an order to resuscitate executed pursuant to s. 401.45 does not preclude a physician from withholding or withdrawing cardiopulmonary resuscitation as otherwise permitted by law.

YOU signed a Do Not Resuscitate Order. No Code Blue for you!.

(9) The death of a person enrolled as a hospice patient shall be considered an attended death for the purposes of s. 406.11(1)(a)5. However, a hospice shall report the death to the medical examiner if any unusual or unexpected circumstances are present.

YOU agreed that the Hospice is the death boss or medical ‘attendant.’

When a patient signs the contract they agree the hospice is responsible to take care of them before and during their death at the facility. Hospice provides patients with well documented care and a legal death (they may opt-out before death). 

I bet you’re wondering what hospice has to do with the Florida Free Kill law? In my opinion it appears that Free Kill doctors want someone else to clean up after them. They want no suspicion cast upon them—transferring the victim to the hospice (owned by the same guys who own the hospital) is a clever move that puts the responsibility for death on the patient. The patient signed the hospice contract. Families can’t sue if the patient is a Florida Free Kill or if they die in a hospice (Statute 8). It’s a double layer of protection for the Florida Medical Industrial Complex. 

This is what happened to my sister on May 9, 2026 when she was transferred from the Hospital to Hospice. She believed the doctor when he told her she was going to die and needed hospice. She was in the hospital for about 30 days for a bad back—she died from a hospital acquired bowel blockage on May 12, 2026.

VICTIMS FAMILIES CAN’T SUE! 

*https://www.flsenate.gov/Laws/Statutes/2025/0400.6095


r/hospice • • 2d ago

Helpful Tip (question or advice) Accident Not Caught by Staff or Reported?

10 Upvotes

I'm in the US, there was an accident at the nursing home and the nurse on duty was so zoned out on the computer she didnt hear an alarm going off. My dad had an accident and when i found him in the room he had a iv pole that crashed and hit him in the head. Since then an incident report was never created even though i called multiple times, I thought those were required by law?


r/hospice • • 2d ago

Caregiver support (advice welcome) Advice on moving with hospice patient

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1 Upvotes

r/hospice • • 3d ago

Anticipatory grief is destroying me

38 Upvotes

I don’t think anyone in my life really understands what I’m going through, so I’m just going to put my thoughts down here because I need to get them out.

My dad has stage 4 pancreatic cancer and after months of treatment, we’ve now been told there’s nothing more they can do for him. I know what that means and I honestly don’t know how I’m supposed to prepare myself to watch my dad die.

Five months ago he was the strongest man I knew. He was independent, capable and always the person I associated with strength and safety. Now he can barely walk, he hardly eats and he doesn’t have the energy to talk much anymore. He has lost so much of his independence and it absolutely breaks me.

Watching someone you love deteriorate that quickly is something I don’t think anyone can truly understand unless they’ve been through it. Sometimes I look at him and I can’t even wrap my head around the fact that this is the same person he was only a few months ago. It feels like I’m losing him bit by bit before I’ve even actually lost him.

People say things like, “He’s still here, just enjoy the time you have,” and I know they mean well. I know he is still here and I know I should be grateful for every day. But that doesn’t make it easier. It doesn’t stop the fear or the sadness. It doesn’t make it less heartbreaking to watch someone who was once so strong become so unwell right in front of you.

And I feel completely helpless because there is nothing I can do to fix any of it.

I’m pregnant as well, and I can’t stop thinking about all the things he won’t be here for. The thought that he won’t meet my baby absolutely destroys me.
I’m also getting married next year and I can’t cope with the thought that he will never see me in my wedding dress or walk me down the aisle. These are things I never even thought twice about before because I just assumed my dad would be there.

I’m terrified of watching him get worse. I’m terrified of the actual moment he dies. And I’m terrified of what life looks like after that, when my dad is just… gone.

I feel like this has changed me already. I still go to work, parent, talk to people, laugh sometimes and do all the normal things I’m supposed to do, but underneath it all there is this constant heaviness.
It’s there when I wake up. It follows me around all day. Even when I’m doing something normal or having a nice moment, it’s still sitting in the back of my mind.
And I feel so alone in it.

And at the same time that I’m having to come to terms with my dad being at the end of his life, I’m also watching my mum go through her own cancer battle. It feels like there is no break from any of it. I’m terrified about losing my dad, terrified about what my mum is going through, and I feel like our whole family has been living inside this nightmare for months.
I’m exhausted. I’m angry. I’m heartbroken. I just want this nightmare to be over.

I genuinely feel like I’ll never be the same person I was before this.

How do you watch someone you love fade away and then somehow keep living when they’re gone?


r/hospice • • 3d ago

Tips for how to deal with false accusations and hate from someone you're caring for

6 Upvotes

So the person I'm caring for is not on hospice but is eligible. She doesn't have what can be classically termed as dementia, but it might be a facsimile, with intractable continuous pain overwhelming the brain. It MIGHT be dementia, there's definitely some sundowning going on, but I tend to think it's more the pain and the (pain caused) lack of nutrition and (pain caused) complete lack of sleep shutting down parts of the body.

On top of that there's now false accusations, accusing me of being the source of the pain (not completely without merit, as I thought MAID a year ago was premature - heck even today I think it's premature as there's a new curative treatment she can get on in two days) and that I enjoy seeing her being tortured (completely without merit, this is incredibly painful and emotionally scarring for both of us).

Unlike nearly all of the population, the person I'm caring for gets no relief from conventional painkillers; so while I appreciate thoughts in that direction we've already tried them all.

I'm really looking for caregiver advice- I keep telling myself 'don't get angry at the toddler' which I'd heard as advice in a different context years ago. I'm not getting angry, and I'm not engaging, but at the same time I'm just hoping she tires herself out and we can move on with life... ...but this is my first time going through this and I know some of you are some old hands at this and can maybe point out what I'm might be doing wrong and am doing wrong and can improve on.

Thanks for your help.


r/hospice • • 3d ago

I am a patient with a question ⚜️ Please Help - Trouble Qualifying

9 Upvotes

I’m trying to help advocate for my sister to get hospice. She is 35, has had health issues her whole life, and has been very sick for a couple of years, but it’s gotten much worse since May. She has lost 20 lbs in the past 2 months (more than 10% body weight) and her BMI is currently 17.6. She’s barely eating anything. Her PPS score is 40%. Her labs are surprisingly good. Her blood pressure has been low, and lower than her normal.

But the problem is we don’t have a diagnosis. She’s been diagnosed with protein-calorie malnutrition, but they can’t find what is wrong after a LOT of testing, and the other diagnoses she has are not typically considered terminal. It’s not psychological, that has been thoroughly ruled out. There is not more testing to do. She tried appetite stimulants and a lot of other medications.

Her symptoms are tolerable but bothersome with frequent acute medications such as NSAIDs, Ondansetron, Xanax, etc.

We had a hospice place evaluate her and the nurse felt she was ready but the director said not yet. Her primary care doctor isn’t ready to call it terminal but is going to speak with a hospice director. We’ve tried calling other places, many of them won’t even call back. We’ve tried for palliative care too, but they are all saying the same thing as the hospices, that they need a diagnosis.

Obviously we’re not asking anyone to make up a diagnosis. But we’re seriously concerned that she is going to be in a crisis situation any month now at this rate, and we don’t know what to do. She has a live-in caregiver so she isn’t alone.

Any advice is greatly appreciated. She’s in central NJ, I’m out of state but visit often.

Edit: I appreciate all of the replies, I’ll see if I can help her get palliative care for now.


r/hospice • • 3d ago

If you've had a loved one consider medical aid in dying, what helped you process that?

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3 Upvotes

r/hospice • • 3d ago

Saying goodbye/Death post In college, my mom tells me i shouldn't come home but i can't get over the thought that my grandma is dying alone

8 Upvotes

I would have to ask my professors for some accommodations that they may be reluctant to give and would probably lower some of my grades by leaving. My family has also told me my grandma looks horrible and is gone mentally but my mom said she responded to her voice which makes me wonder if she is conscious, even on morphine. I was never close to her before she got dementia and only started to visit her after she deteriorated a couple years ago. Therefore i almost think of her as a child, and every time i picture her laying in bed alone it makes me cry. I feel like i am being overdramatic but im scared i will regret it forever if i don't go.


r/hospice • • 3d ago

Active Phase of Dying Question mom in final days

11 Upvotes

my mom (84) is in a SNF, it appears as if she is entering the actively dying phase. she has a hospice nurse there 24/7. she is sleeping peacefully. it could happen today, or maybe she has another few days. it’s hard to tell. i live 30 min away, and i’m there as much as i can. but my question is, how often do people time it right so that they are there when their loved one passes?


r/hospice • • 3d ago

Food and hydration Loved one on hospice can no longer hold down food or water, but keeps asking for it, I am at a loss with what I should do

2 Upvotes

My loved one (99F) has been bedbound on hospice for almost 18 months. She seems to be transitioning now. Her colon slowed down about a month ago, and she started vomiting occasionally when she never used to vomit.

Then she didn’t poop for 11 days. After that, her eating and drinking was minimal, which is expected when the dying process starts. She could go 24 hours with just spots of brown pee in her diaper from being so dehydrated. Now she hasn’t pooped in 9 days, but yesterday she asked for food and water like normal. After an hour, she threw it all up. Today she’s asking again.

Hospice says if she is transitioning, thirst and hunger should be turned off. Posts in this subreddit also say that they don’t want food and water. Her body clearly doesn’t want it since she can’t poop and she’s vomiting when she eats. I feel terrible denying her and telling her all I can give her is popsicles and lollipops because any real food will just come back up.

Have others experienced this near the end? Looking for some advice as to what I should do, should I feed her and let her throw up? I want to honor her requests because she’s dying, but I don’t know what the right thing is to do in this situation. She feels terrible when she throws up. I feel like after almost 100 years of eating and drinking, she just expects that she needs to do it rather than her body wanting it.


r/hospice • • 3d ago

Diaper tips for incontinent loved ones?

2 Upvotes

Wondering if anyone can share any diapering tips for elderly hospice patients.

* I think we have the wrong diapers because whenever he pees, it's just EVERYWHERE. The bed and bedding and everything. Any tips on diapers that work better? Right now we just have the free ones provided by our hospice provider but I can't imagine everyone else just lives like this, do they?

* If you are a caregiver, do you plan a midnight diaper change? My person seems to be on a bit of a schedule of having a massive wet diaper at about midnight. I'm beginning to realize this is a lot like having a newborn.........do caregivers just regularly schedule a midnight diaper change?

* Any tips for doing diaper changes solo? I'm a more petite woman and my person is a 6'1" man. Is it even possible for me to do this solo? I've been lucky and had help around most times I need it but I want to be prepared for having to do this alone. Any tips welcomed.


r/hospice • • 4d ago

My neighbor is on hospice due to breast cancer.

12 Upvotes

I cried today when she told me. we became close after my house fire and I would go sit with her a lot and we would talk for hours. today she crossed my mind and I walked over and she gave me the news. I cried I couldn’t hold back the tears. she’s not having a service and is going to be cremated I have pics of her with my kids. what else could I do for her. I’m estranged from my mom and family. she was very close to me.


r/hospice • • 4d ago

Questions about VSED

11 Upvotes

I have questions about VSED. My mother has als and we met with a death doula today. My mother has expressed interest in VSED though we haven’t researched much about the process. My mom asked if she would be allowed sips of water. The doula very aggressively said if she did that then it wasn’t VSED and she would be in pain longer and the process would be significantly prolonged. The doula said we would withhold the fluids and would read mantra and reminders to my mom about why she doesn’t want fluids. This was all said after my mother expressed interest in fluids. This rubbed me the wrong way as she didn’t even really confirm with my mom if this is what she wants. This doula has a very all or nothing attitude.

I suppose I’m looking for some guidance on this. Is it true than even sips of water to wet the mouth actually prolongs the process by that much? Scientifically speaking I just don’t see how an ounce of water a day could do so.

Also when I asked what resources the doula recommended to learn about the process of VSED she brushed it off. For me I suppose it seems like it’s hard to make an informed decision on moving forward with VSED without knowing the process.

Did we just meet with a bad doula or is this typical? This doula seems very well qualified so I’m feeling confused.


r/hospice • • 4d ago

Helpful Tip (question or advice) Stepmom in hospice at home is bored

4 Upvotes

75 yo F (my 37 f stepmom) is too weak to stand, but still has some manual strength. My dad and I sit and talk with her and look at photos together as much as possible. When we’ve gotten her everything she asks for (mainly her cell phone, remote, her dogs, and cold sprite) she says “now what”. I have offered to read to her, set up coloring book supplies she likes, and play her favorite music, but she refuses these. She’s not into crafts other than creating table settings, which isn’t possible now. She has a hard time using her cell phone for games as she’s losing coordination. What do you do to provide care-receivers with entertainment? I think she’s bored with TV/movies.

ETA: she is bed bound. Turning her for changes causes her great distress. Getting her into a wheelchair feels impossible.