Tell me about using hospice, especially the bad parts
December 16, 2022 6:52 AM Subscribe

Is dying at home actually bad? How can I make dying good? or.... not so bad?

So, two days ago cursed posted this question, and to you dear cursed I send all good wishes and hopes for the best possible outcome. Thank you for posting the question, it has already been helpful for me as I consider my own situation, which I have referenced rather obliquely in past questions and comments.

I will continue to be oblique about my own situation and say only that attending someone through their death may be part of my life sooner rather than later…..and almost certainly will happen one of these days at any rate.

So my attention was caught rather dramatically by Lyn Never’s comment and in particular this:

I have a lot of really strong feelings against home hospice, as "dying at home" is often a pretty myth and in reality deeply traumatic, poorly-assisted, and sometimes physically damages the home in question

My ask here boils down to SAY MORE ABOUT THAT

The obvious is takeaway seems to be use a hospice facility rather than in-home hospice, but if anyone reading this would care to expand on this topic, I am all ears. Basically any advice you have for obtaining a “good death” for a person dying of terminal illness and help for the people caring for them. Thank you.

posted by Jenny'sCricket to Health & Fitness (46 answers total) 25 users marked this as a favorite

I have attended people in both home hospice and a hospice facility, although in neither case was I that person's primary caregiver. In my limited experience there's no question that a hospice facility is easier on the family, and probably easier on the dying person.

The main difference is help. There's tons of guidance at hospice telling you exactly what to expect and when, both literature and staff who have seen a LOT of people through this experience. Staff can also help with the more physically difficult aspects of care (waste if they're still eating, washing, etc.). They can also manage medication much more nimbly when things change. Home hospice generally involves a nurse or attendant who can help with both preparing loved ones and doing the harder stuff, but they are not there all the time, and this also means they're necessarily less reliable (they could get caught in traffic or whatever).

The knock-on effect of this is rest. If you are caring for someone who's dying in your home it's a constant vigilance situation. If you know they're being cared for at a specialized facility, you can go home and get some distance and some rest. It's really, really hard being with someone while they're dying and it's much harder when you don't have anywhere to retreat to.

That said, the other factor is cost. Home hospice is cheaper. But I believe Medicare can help with hospice facility costs. (I'm guessing a little here because again I wasn't the main person in either of these cases.)

I'd also add that neither of the people I'm discussing above was fully lucid, though both were occasionally conscious. I think it might be a different situation if they were more aware of their surroundings.
posted by babelfish at 7:09 AM on December 16, 2022 [15 favorites]

But I believe Medicare can help with hospice facility costs.

I don't think so. When I was looking for "hospice home" options for my dad, the few that we found were private pay. The way to get hospice care paid for in a facility, it seems, is to have the person in question admitted to a skilled nursing facility or a nursing home and have the hospice folks (independently contracted) visit the person within the facility, collaborating with the SNF / nursing home team, essentially.
But that's tricky too, because to be in a SNF for instance, you need rehab goals, so if you're not expecting to improve, they may try to discharge you.
posted by erattacorrige at 7:13 AM on December 16, 2022 [3 favorites]

I'm not an expert but I worked briefly in hospice and both my parents died on hospice. I've also had some experience with people dying in a hospital setting.

There's nothing magical about hospice that makes death easy or pleasant. They provide a higher level of service than almost any other reimbursable medical service in the US. This includes a nurse who visits you in person - frequency depends on severity of disease process, but typically near the last few weeks of life it would be weekly, and in the last days it would be daily. Hospice agencies also provide a home-health aid type worker, although the schedule is limited. They also provide a chaplain and social worker, along with access to additional volunteer services, music therapy or other kinds of non-traditional therapy.

Even with all that, many people need 24 hour care in the last days of life, and hospice cannot provide that. For someone who lives alone, or who cannot turn themself or clean themself, hospice services alone are not enough.

Hospices also vary widely in quality. Unfortunately, there was. a recent expose by Pro Publica about unethical profit-seeking in the hospice industry. Seeking out a non-profit hospice, or a hospice attached to an established HMO system may help one avoid some of the shadier companies.

Also there's a range in quality of providers. Most hospices nurses seek it out because they have a special perspective on care and are lovely, special people. But some are not. Like with any situation where you need the care of a nurse, it's OK to call their boss and state that you need a different nurse - they will switch you.

From my point of view, hospice is a vastly preferable way to end my life than the ICU for example. The ICU involved a half dozen machines and tubes inserted into your body. A parade of staff ranging from various specialists to the cleaning and dietary staff to nurses aids and nurses having just another Wednesday wandering in and out of your room. It involves heavy medications and sometimes violent interventions. For me, stopping those interventions and being at home gives me a feeling of being.. human. A fallible body that deserves to be honored and respected but that does not necessarily need to continue at all costs. But everyone is different, and that may not be for you.

Most everyone on hospice is offered morphine and anti-anxiety meds. This tends to reduce the more terrifying feelings that many experience near the end of life. Other medicines, that sustain and extend life, are removed. While these pain and anxiety meds can greatly reduce discomfort and fear, but they don't take it away completely for most people.

This is about your own values and wishes. There's no right answer.
posted by latkes at 7:14 AM on December 16, 2022 [11 favorites]

Re: facilities: A few communities have dedicated hospice facilities but they are typically funded through a blend of donations and private payment. The hospice services are covered by Medicare, but the facility is not. These facilities are rare. There is also a thing called GIP hospice that covers death in the hospital on hospice. This is something to ask the hospice provider about if you are interested in that. I'm not sure what qualifies one for that - not every hospice agency offers it, but it is reimbursable. A hospital medical social worker can also offer more information on that.
posted by latkes at 7:16 AM on December 16, 2022 [2 favorites]

You can get a do not resuscitate order in place while you're in a hospital setting, and request to have any/all tubes/machines/medications etc discontinued if you are planning on dying in a hospital but do not want to do it with all of the attendant above-mentioned. This is what would have happened to my dad, he would have died with the assistance of palliative medications, we would have stopped the tube feeding and IVs and he had a DNR, if we had left him in the hospital to die. We brought him home because he'd had a really shitty few years prior to his health concerns and I felt for him. Plus I didn't like hanging out in the hospital waiting for him to pass on. That being said, we brought him home from the hospital assuming he'd die in like, 2/3 days, but he actually died after being home for 9 days, which was just... Really surprising, considering his condition.
Anyone in any hospital or clinical setting can refuse any treatment at any time, but hospitals also can't just discharge people without a plan in place, especially if they are obviously at risk for further health complications. This includes if someone is dying. We brought Pop home because we did have a plan in place. Sorry for typos, phone typing with clumsy fingers!
posted by erattacorrige at 7:18 AM on December 16, 2022 [5 favorites]

One of my family members did home hospice, and the chief drawback was that it was a full-time job for two other family members. That person's illness progressed really quickly and I suspect that if it had gone on much longer, everyone would have starrted to wonder if it was the right decision.

Another family member died in a hospice facility connected to an inpatient facility they were already in. They seemed to feel much better once they got into hospice and pain medication was really pushed. But they had a totally different illness and I don't think anyone would have suggested home hospice for them.

My advice is to talk it over with anyone who's caring for them; get more than one perspective. All the best to them and to you.
posted by BibiRose at 7:45 AM on December 16, 2022 [3 favorites]

My mum died in a dedicated hospice facility. The staff would change all the diapers, change the nightdress and bedsheets, turn her to avoid bed sores, be available on demand to deal with pain. That would have been quite difficult for the family to sustain for any length of time (it can be physically difficult once the ill person can't help, not to mention emotionally difficult). The hospice staff are not only professional and well trained, but they all get to go home at the end of each shift, and they get days off, so they can be fresher than someone who has to do the job 24/7 for an undefined amount of time.

In my mum's case the illness was relatively... Tidy and pain free, but not all illnesses are so straightforward to manage, and medical buildings are designed to be easy to clean.
posted by quacks like a duck at 7:46 AM on December 16, 2022 [10 favorites]

My father in law is on home hospice care in California, and hospice pays for a nurse 3X a week to do basic care, like bathing, for one hour a day. A physician comes once a month to verify they are still deserving of hospice care (ie: they don't get too much better).

Hospice also doesn't necessarily mean 'dying', it really just means no dramatic medical interventions will be undertaken. A distant relative was on hospice care for 5 years, my FIL has been on care since January, so almost a year.

I agree it's a full-time thankless job for my MIL, who is also elderly and in poor physical condition. Its a full time job for my wife as well, when we are able to visit.
posted by The_Vegetables at 7:53 AM on December 16, 2022 [4 favorites]

My husband died on hospice care at home. His neurooncology NP was clear that he could transfer to a hospice house if I felt like it was more than I could handle with the help I had available (via the hospice nurses/assistants, friends, and family). I think it was really comforting for my husband to be in a familiar place. I wasn't totally satisfied with the amount of help/degree of responsiveness we got from the hospice organization (this was six months into the pandemic and they were dealing with staffing shortages, etc.), but I don't know what I would rather have done. It was rough, but, you know, he was dying. I've only been present for one other death (my grandmother's death from congestive heart failure, in the hospital) and I don't think my husband's death at home was any worse than that (I mean other than that he was 37 and my grandmother was 87).

I think the big advantage of being in a hospice house rather than at home would have been extra sets of trained hands for things like helping him get comfortable, toilet stuff, etc. Also presumably a hospice room wouldn't be the accessibility disaster that our house was/is (so many stairs, raised thresholds, narrow doorways)! I probably would have gotten more sleep if he were in a hospice facility - as others have mentioned, when you're doing at-home hospice, a lot of work falls on the family member/caretaker.

I think the degree of danger (to the patient, to the caregiver(s), etc.) probably depends a lot on what abilities/disabilities and symptoms the dying person has. Someone who's semi-mobile and belligerent and is months or years away from dying is more dangerous to themself and others than someone who's bed-bound and kind of confused and has a few weeks to live (the scariest part for me was when my husband was very confused but still somewhat mobile, and any time he was out of my sight I was afraid he was going to try to get out of bed and fall). One person can have 20 years to live and still require 24-hour supervision; another person can have a few months to live and still mostly be able to take care of themself.

We all die, but we die in some really different ways.
posted by mskyle at 7:54 AM on December 16, 2022 [16 favorites]

If the home hospice is the same place where the caregivers live, do the caregivers have any thoughts about continuing to live there afterwards? In my limited experience, some have found it peaceful to live where loved ones have died and sense their spirit whereas others have found it distressful to have memories of death surround them.
posted by beaning at 7:58 AM on December 16, 2022 [8 favorites]

My mom died at home under the care of hospice. Hospice was wonderful in that they could do almost anything magically overnight - need more morphine? bed pads? hospital bed? body wash? comode? We had all those things overnight. We also had a nurse on call at all times to ask questions to, and who came when we requested it - sometimes in the middle of the night when we were at a loss as to how to help mom be comfortable. Mom was very clear she wanted to die at home, there was nothing really "wrong" other than old age and dementia, and there are five siblings, plus a lot of others, who shared the burden of being with her 24/7. Even with that we hired additional help for overnights or when we needed a break.

And even with all of that, the day before she died, I was calling different nursing homes to tour. Because in the last couple days it became clear that she was going to need two people with her at all times - one person couldn't get her to the commode, or get her turned in bed, etc. and she was becoming more agitated - and there was no way we could swing that (there was no way we could have swung most of it, except we all got to work from home because of the pandemic. Weird to be partly grateful for the pandemic!)

So, as others have said, hospice doesn't provide 24/7 care. They were wonderful at helping us keep my mom pain and agitation free, and with ideas about how to make certain things easier. They would have visited a nursing home and worked in conjunction with them there had we ended up moving her.

I'm sorry you're going through this. It is hard. It can also be a gift for you and the person you're caring for, but it's still hard.
posted by dpx.mfx at 8:00 AM on December 16, 2022 [5 favorites]

I don't know anything about hospice or death really, but I want to add a tiny bit of info to the conversation. You might look into end of life doula services (aka Death Doula). I don't think most people know it's a service that is available.

Much like birth doulas, having someone who has experience with death and dying people can be comforting through the process and they can offer advice and insight into all the things surrounding death (from physical comfort and emotional support for both the dying person and their loved ones to logistics with funeral services, etc)
posted by CleverClover at 8:04 AM on December 16, 2022 [16 favorites]

I have supported both home and hospital hospice and we did my mother's hospice at home. It is a trade off - at a facility you have help (as covered above diapers, monitoring, medical schedule, etc) and the space is set up correctly. At the end, the person is like a baby; they need 24 hour care. And depending on your home, it can get real weird trying to cram a hospice set up into a living room or den. And cleaning is an issue.

But what was nice about home is that you get to be with the person, support them the way they like and regulate their meds really specifically (if you know how) so they will be more awake at certain times.
posted by mutt.cyberspace at 8:04 AM on December 16, 2022 [1 favorite]

A small plug for Atul Gawande's Being Mortal, which has some useful framing and ideas about how to approach this sort of thing, especially with how to talk to each other about what the person wants.
posted by matrixclown at 8:07 AM on December 16, 2022 [8 favorites]

In my case, I haven't been the primary care person, but I've been close those who have been. In those cases their loved ones were at home until their care became unmanageable and then were moved to a palliative care room at a hospital for the last few days of their lives. Those rooms are generally designed to keep the dying person comfortable through the dying process, and to provide a comfortable place for their family to be with them.

Caring for someone who is dying makes your world stand still for that time. As others have said, many people require 24 hour care. They need help with most aspects of life including bathing and toileting. Often their bathing/toileting/living/eating/sleeping place becomes one room in the house. If you can hire a support worker or nurse to help, that's good. But they can't be there all the time. Often you're the main source of support and that can be lonely. It changes the nature of your relationship with the person, and you need to know that is what you're in for.

I think there are a couple of things you can do to research and prepare for caring for someone who is dying, and who might want a home death.

1. Know what support services are available to them and to you, and how to avail yourself of them.
2. Have a checklist of what needs done after the person dies. Who needs notified (doctor, funeral home, etc.) - check on the specific laws in your area for this. Often this would be considered an expected death, and emergency services may not need to be called. The last thing you want to do is to be frantically trying to figure this stuff out when you should be spending those moments after with your loved one.
3. Have an exit strategy. If at home becomes too much, know at what point you can transition to hospice or palliative care if you need it.
posted by eekernohan at 8:31 AM on December 16, 2022 [1 favorite]

I have a lot of really strong feelings against home hospice, as "dying at home" is often a pretty myth and in reality deeply traumatic, poorly-assisted, and sometimes physically damages the home in question

My ask here boils down to SAY MORE ABOUT THAT

I have an example with gory details that will make me think twice about home hospice, depending on the symptoms. My close friend cared for his dying (late 30s) wife with home hospice. It was traumatic for him, though he said at the time he wouldn't have wanted it any different. They were one of those strongly bonded couples that many people envy. They just loved being together, all the time. They were still goofy in love after 15ish years together. They had no kids.

She was dying of brain cancer, which she'd lived with for 8 years. She'd had her second brain surgery a few months before she died. After the surgery--to debulk the recurring tumor--she was walking and talking for a few weeks but got an infection, wound up in hospital again, and that was her downward spiral. She chose home hospice.

So, as she was dying in home hospice, she had a large, not very old brain surgery incision. It was above a piece of skull they had to remove to get at the tumor, before replacing the skull piece. Her hospital bed had been set up in the den on the first floor, so that (as long as she was conscious) she could look out at trees and birds as she progressed toward death. The proximity of the den to the front door, and to the kitchen, meant that he didn't feel comfortable having visitors unless they were immediate family or two of us as close friends, because there was no glossing over the fact that there she lay, dying before our eyes. It also meant that even while feeding himself, or getting a glass of water or a much needed beer, he was always "on." She was probably unconscious, or mostly so, for about 6 weeks before she died. During that time, a nurse visited twice per week to check in on her symptoms and attend to anything she could. He loved the hospice nurses and insisted at the time this was enough help for him. Reader, it was clearly not. Not only did he bathe her and take care of her toileting, but her head was also leaking spinal and/or brain fluid for a couple of weeks at the end. He improvised in dealing with it until the next time a nurse visited. I think there were many many ruined linens and household items, to say nothing of (what I imagined to be) his ruined sleep for life with these memories to sort through. This was when I learned that home hospice often (usually?) involves hospice staff providing family caregivers with enough morphine to help the dying person pass. I'd honestly had no idea; I felt naive.

I know that he was terribly afflicted with grief during this time. Who wouldn't be? His longtime friends lived 3000 miles away. Other than us two close local friends, his only support other than sympathetic coworkers were her local-ish family. Unfortunately, their grief asserted itself as more important than his own, and he felt pressured to care for them and handle their needs when they visited her as she lay dying in the den. He was terribly isolated, caring for her around the clock for months. There was no break for him, other than a few visits to the gym or to pick up food in between our deliveries. There were days he didn't want us coming inside, and I worried about him on those days. I worried about his being in the house with all that morphine. I removed his hunting guns on the day of the funeral.

On the day she died, likely helped by a morphine dose too big for her to survive, I'm certain that he woke up--if he'd slept at all--and decided she had suffered enough. I don't know, but I hope, that he also decided he himself had suffered enough.

So far, this was my only experience with hospice. I would definitely think twice about doing it without a massive, massive amount of support so that I could take breaks. I would also (after losing my own brother horribly to covid in NYC early in the pandemic, with truly horrible things I can never unsee) think twice about taking on the exposure to seeing things that I would never be able to unsee.
posted by ImproviseOrDie at 8:44 AM on December 16, 2022 [18 favorites]

Basically any advice you have for obtaining a “good death” for a person dying of terminal illness and help for the people caring for them.

1. Consult with the person who's dying, their wishes, wants, and desires override all other concerns, for the most part. My wife did not want to be in a facility or hospital, she wanted to come home to die, so that's what what we did, though it was "harder" on me being her caregiver. But that's what she wanted.

2. There is no good death, only death. I believe you want to do the best by this person and make sure they're as comfortable as possible, but it's important to remember that there's only so much you can do. Most likely the best you can do will simply being there and advocate for as much pain relief as possible.

3. Let other friends and family know what's going on, as they may be in position to offer some type of help and comfort in some way.

4. Read the very short pamphlet (10 pages), Gone From My Sight, The Dying Experience. It gives a basic idea of what to expect in this situation.

5. Doing hospice at home puts you in control in terms of delivering medication to the dying person. No question that this can be hard on a caregiver mentally and emotionally, but on the flip side, there's very little wait for the person needing the medication. I strongly encourage you or anyone to be as generous as the nurses recommend with pain medication. In the end I was absolutely over generous, with no regrets, when it was clear my wife was finally passing, just to make sure it was painless as possible for her. But I had a family member who was a nurse and who was physically there and advising me.

6. Yes, doing hospice at home means you or someone will have to assist with changing diapers, assisting with toileting, helping with bathing, changing of clothes, along with helping to eat, drink, and take medications. Anyone doing this needs to be ok with that fact.

In the end, I think it really depends on the unique circumstances of each dying person in terms of whether to go with a facility or home hospice. My wife was getting excellent care in the hospital, but she did not want to die in a facility, being at home and in familiar place was her priority.

Notes about dying at home on hospice:
A nurse will have to come out and verify that the person has actually passed. What that means is there will be the actual time of death and the official time of death, aka when a trained medical professional confirmed the person has passed. You're allowed to have whatever feelings you have about this, it's just important that you're aware of the legal/medical system that tabulates these aspects.

It also means you'll be home with the body for a bit, which can be either unnerving or a chance to say any final goodbyes. This also means that someone will have to come and collect the body for the funeral home, so you there may be awkward logistics of removing the body from the home, which means transferring the now deceased person from the bed and into a body bag and then out to vehicle. Do what you feel comfortable with and remember that it's also possible for you to go out in another room or backyard so you don't have to see or hear of this process.

It will take some time for funeral home attendants to arrive and there's all the usual caveats with traffic so it make take longer than you expect or want. We used them time to pick out a suitable burial outfit, say words, and have various private moments.

If the person dying has been given morphine, try to keep track of how you're giving the person and when. Because the hospice nurse who comes to confirm death will need to collect any remaining morphine and account for any that has been used. There's nothing quite like a nurse gently asking you to account for morphine while the deceased in the next room and you really don't give a fuck about those specifics, but the nurse has to do their job.

Buy some coffee, even if you or no one else drinks some. The hospice nurse may need the grounds to mix any remaining morphine with, just so that the drug is no longer useable by anyone. Yes, that can be undernerving, but you need to be aware/remember that there are other processes going on here.

Be aware that the hospice nurse who comes out to give the official time of death will probably not be the nurse you were assigned or worked with the most. It's usually whichever nurse is specifically on call to come out, so getting a different nurse can feel odd, disorienting, and frustrating on top of an already stressful and emotional situation.

Dying at home means that there will be room in the house that you know your person died in. How you expect to deal with that in the aftermath of the death should be a factor in your decision.

The length of hospice is probably also a factor in terms of a facility vs home. My wife was home only six days before passing, which was a bit short, but it also meant she (and I) didn't suffer long, just in the sense that she was bed ridden at this point and wasn't thrilled about not being able to get up out of bed. Had she lived as long as the doctor's originally estimated (3 months to a year), that would have been stressful in the long term and I might have different feelings about home vs facility hospice.

But as it stands now, I firmly believe that home hospice was the best choice in this specific situation. We got generally excellent support in terms of rapidly getting a bed, bath lift, and extra oxygen, all from kind, caring, and helpful staff.

Let whatever support system you have known what's going on. If you have none, check with hospice to see what they have.
posted by Brandon Blatcher at 9:01 AM on December 16, 2022 [28 favorites]

dying at home was one of the few requests & requirements my mother had that I was able to make happen. it is only advisable and practical for people with predictable terminal illnesses who have the kind of home setup and the means to afford the kind of home care that make it possible. that means someone(s) other than, and in addition to, the visiting hospice nurse and the home health aides, both of whom you also need. either a family member or trusted paid helper to whom the dying person matters apart from their status as a job component, who can be trusted to e.g. not only not steal the morphine but administer it when it is needed. not everyone will be able to find and arrange and pay for these things. someone who has been dying at home for even a short while should already have the kind of disposable bed protectors etc. that will make post-mortem cleaning more tolerable. that is also something that can and should be hired out.

I cannot imagine voluntarily forcing someone to die in a hospital who didn't want to go there. I can imagine being forced to do so by circumstance and it is a nightmare that would never leave me.

I should add that my mother cared for my father when he died at home many years before her, in the same room. so she knew what it was like and what she was asking for. she also knew what hospitals were like.
posted by queenofbithynia at 9:02 AM on December 16, 2022 [2 favorites]

Sorry you are going through this….
As others have pointed out, hospice is a type of care, not a location.

My sibling’s hospice home death was traumatic, but I don’t think any more traumatic than a hospital death would have been. He did need surgical dressing changed, and some of us got thrown into that which was scary and stressful. We do have family and friends with medical backgrounds who were very very helpful.

One positive about being at home rather than in a facility was the convenience of people being able to come and go easily, so there was a nice gathering of friends and loved ones across several days.

When my husband was dying at home, I was the only caretaker. The hospice staff was competent and professional, but there were different people on-call each day, so it was a constant meet and greet. There were also superfluous people such as a well-intentioned (but useless) social worker, and I found myself constantly having to make small talk and chit chat. It was exhausting and draining.

The health care aids who came in and washed him were angelic, he was tenderly cared for those last weeks.

I did have to ask to up the dosages as his pain and agitation increased.

Which brings me to this comment from the question cited in the question:

"The one upside of in-home hospice is that at least one nurse (depends on if you get to see one more than once a week - don't count on Medicare hospice being good in any imaginable way) will take you aside and tell you in painful detail what constitutes a morphine overdose. This will be framed as a warning, but is actually instructions."

First, for what it is worth, I did not find the Medicare hospice better or worse than the non-medicare hospice experience.

As far as morphine, in my experience no one explained anything. When my mom was on hospice care, one of my siblings was very concerned about the ethical implications of what they saw as essentially an assisted suicide as the dosages increased. I didn’t see it that way, or at least I did not see it as an issue, but it is something to be aware of.

With my husband, we all were aware that once we started the morphine, he’d be pretty knocked out, so we did try to hold off for a day so he could see some family members coming from out of town. The last several days, I was giving him morphine every three hours. He had cancer and was in a lot of pain….did he die of the morphine? I dunno, and I don’t really care.

I hope some of this was useful. You do the best you can do. Your loved one will know that.

Good luck.
posted by rhonzo at 9:15 AM on December 16, 2022 [6 favorites]

so she knew what it was like and what she was asking for. she also knew what hospitals were like.

Oh, it's worth noting that in my specific situation, when caring for my wife, she did spend some time at a facility, doing some physical therapy. It was not a good experience and pretty much sealed the deal that she was never ever going into any type of long term care facility.
posted by Brandon Blatcher at 9:15 AM on December 16, 2022 [1 favorite]

My brother had widespread cancer, likely starting at his pancreas, and came home from the hospital to hospice care at home. His wife and lots of family were there, and he died peacefully a few days later. What made it work is that my sister is a Nurse Practitioner with many years specializing in end of life care. She managed his pain and hydration, etc. Also, my brother needed only comfort and hygiene care, and his death was imminent.

Some family members and friends were uneasy about sitting with him and talking to him (he was comatose, not sure how deeply). People learned quickly by example. We played his favorite music, the dog laid on the bed with him and we put his hand on the dog. We told him we loved him, told stories, chatted, held his hand. Told him we valued him and that it was okay to go. We could not have had this experience if my sister were not there taking care of the nursing part and showing us how easy it was to be with him, not scary or weird.

Dying is messy and many people will be deeply uncomfortable with the physical aspects of severe illness and death. That isn't unreasonable. Improvise or Die's story is ghastly, the hospice should have provided far more care.

I'm so sorry you have the death of someone you love looming. I am happy that I visited my Mom a lot at the end of life (1,000 miles away), that I have visited people in home or hospice care. It was most meaningful to visit with my brother when he was still able to speak; he knew he was dying and spoke to everyone privately and with love. But also to sit with him in his last few days and be present with him and for him.

The other very difficult thing was that the social work staff at the hospital were extremely blunt with my sister-in-law. She maintained a facade of hope as her way of coping, and they really shot her down. My brother found out Thanksgiving week that he had widespread cancer and that treatment was a very long shot. By mid-December, it became clear that treatment was not feasible, and he died just before the new year. I wish he'd gotten better care, an earlier diagnosis, a chance to fight as he wanted. But I think it would have made little difference because pancreatic and liver cancer are fucking ferocious. The nursing staff at the hospital were great, we had Christmas dinner with him in his room, lights and all. We helped him make the most of his last days of consciousness, which I think was most important.

A family member went to a local hospice and got fantastic care, anyone on the visitor list could visit any time, and I would recommend this if there's an excellent hospice available. Death isn't romantic, certainly not pretty, etc. It's just real, and people deserve to have their pain managed and be treated with as much dignity and respect as possible.
posted by theora55 at 9:31 AM on December 16, 2022 [3 favorites]

Sorry if this article has already been mentioned at some point up above, but you may want to check out a recent NY Times piece. It has some relevance to your question. A non-paywalled version is here: "She Preached Death Without Fear. Could She Practice It?"
posted by akk2014 at 9:41 AM on December 16, 2022 [1 favorite]

My mom died of pancreatic cancer in an inpatient hospice facility last year and I have Feelings about this topic. We used in home hospice for 3 months prior to her death and it was not ideal. Providing her care was a full time job for myself and her husband, and a part time job for my brother, on top of the aides and nurses who provided care. The hospice company we were with typically sent CNAs who were not able to dispense medication so they were basically not helpful at all. We treated them more as respite care, like if they were at the house we could leave go to the grocery store or something. When she was on “crisis care”, meaning we begged the supervisor enough for help, she would have an RN during the day who could give her medication. She had bowel blockages that couldn’t be managed at home and the first hospice facility she went to was absolutely disgusting, she was in a room with another moaning dying person whose diapers were changed while my mom was laying like 4 feet away from her, it was horrific and we got her out of there and took her home after 12 hours. After that experience I was adamant that she die at home. However 2 weeks before her death a doctor told us she was going to have some extremely unpleasant symptoms of a bowel blockage that I don’t even want to type, and we knew we would not be able to deal with this at home. She ended up at a beautiful serene facility with nurses who were angels of mercy. She did not have any fluids for 10 days and had a constant drip of dilaudid, an anti-convulsant and a bunch of other stuff I can’t remember. All of this is to say – dying is hard work. When someone is dying of something horrible like a GI cancer, it is very ugly and not really something laypeople are equipped to deal with anymore. My mom’s suffering and all of our suffering would have been tenfold had we persisted in her dying at home. If one hospice company or facility sucks, keep looking until you find a good one. Sending you strength during this time – feel free to memail me.
posted by tatiana wishbone at 9:50 AM on December 16, 2022 [8 favorites]

Oh and also - seeing my mother’s dead body was the single worst thing that has ever happened to me, after a year of seeing a lot of other single worst things, and I absolutely do not recommend having a loved one’s body in your home. I REALLY thought I was prepared for that, I wanted to be the one to wash her and dress her (Jewish custom of tahereh), I watched all the Caitlin Doughty videos, and instead I just fainted and continue to be haunted by that final image of her. It doesn’t look like the movies.
posted by tatiana wishbone at 9:53 AM on December 16, 2022 [12 favorites]

My father died of terminal lymphoma, with some semblance of home hospice care. He said he was tired of hospitals and didn't want to die in one. I respected that, but I was 26 and inexperienced with aging and dying care. We didn't even get home hospice approved until a few days before he died, and after their assessments of his needs, said they would come once a day.

I needed far more help than that, and felt out of my depth. I struggled to help with toileting (he had lost tons of weight but was still heavier than me), getting him to take medicines, and when and how to ensure he was getting the food and liquids he could stomach. When it came down to the last few hours, I had trouble telling if he was still alive, embarrassing as that is. I was stressed out, alone, listening for breath sounds and feeling for a very weak pulse.

I wasn't that skeeved out being alone with his body after he passed, but it was a bit odd, turning the thermostat down as far as it could go (he chose to donate his body to medical research and the folks I had to call advised me to do this) and just... waiting.

I hope I gave him the death he wanted, and I tried to put on a strong face, but I wish I'd had more help. I don't know if hospice facility care would have been the right answer, but maybe more frequent or constant home care. The idea of a death doula as mentioned by CleverClover, is brilliant, and I wish I'd had access to someone like that at the time.
posted by rachaelfaith at 10:03 AM on December 16, 2022 [11 favorites]

When it came down to the last few hours, I had trouble telling if he was still alive,

Came here to talk about this. When I was 21, my father wanted to die at home (colon cancer), but at the last minute asked to go to the hospital. (I was being kept out of this decision, but I do remember my mother arguing with him, telling him he didn't need his shoes.) It was decided that my sister and I would ride with him in the ambulance.

But as they were putting him in the ambulance, the hospice worker said to us: "He's gone, you won't need to go with him." So we didn't. Then an hour later, my exhausted mother was in the shower. The phone rang. "He's still breathing," the hospice person said. So what does that mean? I asked. "I don't know, go ask your mother." So I went and shouted through the bathroom door, "Mom! Mom! Dad is still breathing!" She didn't hear me at first because she was in the shower, and I didn't know if I was supposed to yell louder or whether it actually mattered. Was she supposed to come running out of the shower so we could race over there? Or not? I had no idea and was incredibly confused and upset. I can't remember the specific details, but she got on the phone and we didn't go anywhere and it was a very short time later (less than a half hour I think) when they said oh, now he's really gone this time.

This kind of WHAT THE FUCK IS GOING ON RIGHT NOW THIS MINUTE, especially when you're incredibly upset and exhausted, is terrifying, and having good communications with the hospice staff is essential. Ask them what signs to look for for death (no breathing, bloodless lips, etc.), and as it gets closer make sure you have your entire support system in place.
posted by Melismata at 10:32 AM on December 16, 2022 [4 favorites]

I'll say more about my experience for sure, but the biggest lesson I've learned about "hospice" is that while I assume somewhere there is a defined standard of care tied to that term, what you GET in the moment you make the call appears to be a total game of roulette on top of being very dependent on your insurance/finances and where you live.

I've now been through this 3 times with grandparents and a parent, and here's how it went:

Grandfather: WWII Purple Heart, still on Tricare through the Army plus I guess a Medicare sidecar, and they'd bought into long-term care insurance 25+ years before, so like bags of money available for care. Already basically proved unkillable, determined to live forever, and non-negotiable insisted he wanted to die at home in his own bed. Lived in the DFW area so significant VA presence and Tricare network because of Carswell JRB. My mother and grandmother were his full-time caretakers once he came home for the last time, but for the first couple months (again: too stubborn to die, at a point where his cancers had their own cancers) they had a nurse line available by phone any time and someone popping in a couple times a week, and then daily, and then eventually they had an overnighter every night for respite coverage and drop-ins during the day.

Once or twice a week the drop-ins included an assistant to help with bathing, but my mom and grandmother were changing diapers and doing that cleanup several times a day. Everyone took him very seriously about "in my own bed" and so they did not get a hospital bed brought in so he was too low for OSHA safety regulations for rolling and moving and changing. My mom and grandmother were basically injured the whole time. Even with overnight respite care they suffered too much hypervigilance to ever really sleep. And as his mind went, he was no longer the Greatest Generation veteran and Sunday school teacher; he was verbally abusive and sexually inappropriate and it was worse at night. My mom stopped letting me come over. (Neighbors called the police at least twice because of the shouting and screaming. I can't imagine someone going through this in an apartment.) It took him about 5 days in a semi-coma at the end before he passed. The bed and the carpet had to be removed and replaced once it was all over. My mom and grandmother did the best pass they could for valuables before he came home from the hospital for the last time, but things went missing on a regular basis with all the traffic coming in and out of the house, and while some of the home help was fantastic some of it was pretty bare minimum effort.

My grandmother, same insurance/coverage, was so traumatized by it all that she gladly went into a hospice facility. The place was lovely and the staff was great, but you still do need someone there most of the day because staff is only making rounds to check in and provide basic support and meds. You're still doing some diaper changes if you don't want them to have to wait a couple hours maybe. But there's a good hospital bed and a bathing room with a lift and basic hospital catering, plus a family kitchen and lounge so you can make food onsite for yourself or the patient. There was a pull-out couch for overnights and one person was allowed to sleep over.

Unfortunately she didn't die fast enough, so she got booted and we had to move her to a nursing home. My aunt has worked in and around care facilities most of her career and none of us want to go to one. My mother could at least leave for a few hours, but was also aware that only very basic and emergent needs were going to get met if her back was turned. My grandmother died there, my mom did most of the work. It was a quieter death but my grandmother was oxygen-starved (from the cancer, not from lack of equipment) and frightened and anxious for the several days it finally took.

My parents did not have luxe insurance and lived in a much smaller town in a region with not much in the way of big robust health care systems. My father initially was in the hospital until his condition was determined to be shitty but stable enough for a nursing home, where a couple weeks of assessment and additional imaging determined his situation was not treatable, at which point they told my mom to clear out the living room because the bed would be delivered that night and he would arrive in the morning. (He got home, incidentally, simultaneous to my MIL in another state being taken off life support two days after a heart attack, so I was not much help during this time. But also, my mother who is still deeply traumatized by caring for her father told me that she'd rather just be more traumatized alone than me have to experience it myself.) She did not want this. She did not have any other choices that wouldn't have involved financial ruin.

My father's initial emergency downturn had created a situation where my mom just had to cut out and dispose of part of the living room carpet, but just like with my grandfather the rest of it didn't fare terribly well with catheter and other fluid accidents.

A nurse came once a week, and a CNA came twice a week to help bathe him and change the sheets, which my mom couldn't do alone because she couldn't lift him. I don't know if my mother is kindly lying to me, but she said that aside from being pretty constantly hungry - and she would go out and get whatever he was craving - but only able to eat a bite or two at a time, he mostly slept somewhat comfortably. He was scared, and that is normal and he had ativan, but it is hard to sit and watch. She knew how to manage the morphine from the first two times, and I don't think she had it in her to escalate but I don't think she suffered so much anxiety about accidentally giving him "too much", which is a thing the nurses tell you about while making very pointed eye contact (I had to explain to her, when my grandfather was dying, that they were not scolding her but rather giving directions). I sent them a patient call system so dad had a "nurse button" that would buzz in the bedroom, and she was able to get something like more sleep. He passed one night while she was asleep.

In conclusion, none of it is guaranteed to be perfect but home hospice is HARD. It's literally very hard physical exhausting scary work with potentially little experienced support, and it is very hard for one or two people - one or two not-working people, or maybe four or five working people - to physically, emotionally, and medically manage, in an environment that is sometimes just physically non-optimal for the tasks and equipment.

It is also, in our experience, incredibly hard to get insurance to tell you what help you are going to get, and to some extent that seems to be related to HOW the doctors and social workers or whoever write up the orders or whatever that tell insurance what is needed. My number one advice would be to get your hands on someone with experience navigating that system professionally to make sure the right instructions are given to/by the right people with the right wording.

In-hospital and in-facility hospice care can also be very demanding on family/etc if you have standards for your loved one beyond the bare minimum OR if your loved one is not experiencing a relatively easy death or requires fairly complex support. It's not really a free out but it does mean you can technically get away if you must attend to work/school/childcare etc.

It all sucks in the sense that somebody's gonna die no matter where it is, and death isn't necessarily peaceful even if it is micromanaged with the best available care. Obviously if I had no choice I would care for someone at home, and if I was ever in the position to make this offer I would offer MY home for someone I knew who had no choice, to at least disconnect the trauma from where they have to live but also to make sure we're spreading out the work among as many people as possible. I totally understand a desire to avoid either hospitals or non-specialized nursing homes, but I think people think of home as "easy" because getting there is easy, but dying there is still hard and in some ways extra complex than dying elsewhere.
posted by Lyn Never at 10:35 AM on December 16, 2022 [9 favorites]

We played his favorite music,

Yes, again in my limited experience, those sitting with the dying person often found background music/TV or reading aloud from favorite literature helped if the quiet became uncomfortable.

Also, if the dying person has a native language other than the predominant local one, will there be anyone around who can assist? A friend's wife who was bilingual spoke almost solely in her childhood language as she neared death; however her spouse and nearby offspring had never learned to speak it fluently as they lived in another country for the vast majority of their lives. Fortunately, another relative who was fluent in a related language arranged to work remotely at the hospice site while other family members arranged travel and lodging to come stay and help. While the languages were not a perfect match, the wife seemed to find comfort in hearing responses that were similar.

Which leads to being aware of time constraints for those who need to travel to be there at the end. There were some for whom it took a bit of pushiness to have them realize how near her dying time was, and others who wanted to be there sooner but their own work/home logistics had to be first addressed.
posted by beaning at 11:46 AM on December 16, 2022 [1 favorite]

We just had a relative end his life in home hospice. It was the only option, really--there were no hospice beds available, and he had disabilities that meant he would have had trouble communicating with most nurses. Another relative did the same thing a few years ago. I was impressed by the amount of support provided by the hospice place--they sent a nurse several times a day as well as a masseuse. They were very available for questions.

The downside was that there needed to be someone with the dying person for the entire time. Particularly early on, dying people tend to want to get out of bed. It essentially took a "staff" of 3-5 volunteers who loved him to keep him safe. We were all exhausted and some family members declined to help due to their discomfort with the process. The whole thing took ten days but it felt endless.

Sorry that this is something you need to worry about right now. It's a good idea to think about it in advance, though.
posted by chaiminda at 12:12 PM on December 16, 2022 [1 favorite]

Years ago I was privvy to a Hospice situation administered by experienced Dutch Hospice workers in the U.S. and it struck me, in its best case form, as a very civilized practice. My impression is the Dutch were early to ideas of Euthanasia, assisted suicide and non-resuscitation on request, and it's obvious that most people would prefer to die at home rather than in a hospital or other institutional setting.

By the same token, if you scratch the surface — which none of us should have to for when is death not fraught — a lot can go wrong with something like Hospice in a country like America that can make the most important questions of life and death ones of profit and loss. Just recently, the New Yorker published an article called How Hospice Became a For-Profit Hustle, and I've seen instances where Hospice was brought in because long-term care was costly, and the decision-maker was basically economizing on a vulnerable person's life, which makes me a little sick, frankly, though I'm aware it happens all the time, and there may be just cause in some cases. Because these issues are so fraught, and so liable to get perverted by money, I wonder if you might find Death Cafe a useful place to explore them. I'm sorry you're having to face such hard questions.
posted by Violet Blue at 2:20 PM on December 16, 2022 [1 favorite]

I've been very closely involved with three deaths: my father, at home with hospice care; my mother, in the hospital ICU and my aunt, in a hospice facility. The hospice facility was far and away the best death and even if I have to go to Asheville, NC to die there myself I might just do it.

My father was adamant that he had to die at home. My mother and younger brother had managed most of his care before I got there - hospice brought in a hospital bed and the hospice nurses came once a day. It was not enough. He had to be bathed and given morphine and diapers changed and it was a LOT. Some of the hospice nurses were great and helpful, some were neither. It was really distressing. Somebody had to be there in the room 24/7 which was mostly my mother - and when the nurses would refuse to turn him or bathe him, which they did, it was tough. She and my brother chased at least one nurse out of the house. I got there three days before he died and they had basically developed a siege mentality that wasn't helpful, but lack of sleep and panic and so on will do that to you. I really wished then and wish now he had been somewhere else, so my mother could have gotten at least a brief break here or there. The death rattle was . . . rough. My mother just lay there on her own bed in the room. When he died she didn't notice - she thought he was feeling better because the rattle had stopped. My brother and I came back in the room and she said, oh, he feels better now, he's breathing so much better.

My mother was in the hospital for emergency surgery and died either on the table or in the recovery room but the hospital ignored her DNR (they do not apply to surgical deaths, we were told) and brought her back to suffer for two weeks. It was horrible. She did have whole days of feeling better but also days of terrible pain. She developed MRSA and so everyone who went to see her had to suit up to walk into her room, which was horrific. She went ICU, regular room, ICU, regular room and finally back to ICU and it wasn't until the last ICU stay that the hospital staff started being honest about the fact that she was not going to recover. Oddly enough no hospital staff but one nurse were anywhere to be found when they called us in from the ICU waiting room to say goodbye - and that nurse gave her a massive dose of morphine, I think, and said, she's leaving now. I was grateful for that final mercy but I have wished ever since that we had sued the place down to the bare bones for the rest of it. The whole experience was just horrible, the false hope, the death and recovery - it was so hard on all of us but most of all, of course, on her.

By contrast, my aunt ended up in a hospice facility. She had been in the dementia wing of an assisted living facility and she had stopped eating. They weren't sure if she qualified for hospice but somehow, she did, and then, even more surprisingly, although we had been told there was no bed, a bed opened up. She hated the nursing home although it was really a nice one, but ok, I don't blame her. The hospice facility was just lovely. There was round the clock care, there was a meditation room, a garden with a winding path around it. They asked me if she would like spiritual care and I said, not thinking anything could happen, that she was a Tibetan buddhist. Which she sort of was, she was an old hippie who actually was part of the Rajneesh ashram in the 70s LOL. The hospice found a Buddhist monk to come in and he sat there with singing bowls. I could not believe it, I cried buckets that they could be so thoughtful. It was such a relief to have other people who could handle her physical care so I could sit there and read Jeeves & Wooster to her (she said the Tibetan Book of the Dead was too scary so we switched and Wodehouse made her almost giggle.) She died very peacefully; my brother was with her.

I know other people who have had better results with at home deaths. The key is having a LOT of people - you need a roster of friends and family as well as hospice so nobody ends up with all the care. The other thing is you do not have any idea how long it will be. My father was about ten days from hospice coming in to the end; some people linger for weeks. You need people signed up round the clock to sit with the dying person and it is a lot. If you don't have a widespread extended family / network of close friends, I would strongly recommend going with a facility. It's funny, now that I've written this all out, I have made some decisions about my own ending. It's hopefully some years away yet but it never hurts to be prepared, and I don't want my children to have to deal with my dying at home.
posted by mygothlaundry at 2:28 PM on December 16, 2022 [15 favorites]

My aunt died in hospice care in a long-term care home. It was about 2 am, no nurses were around, and I sent my sibling to find someone, because my aunt’s condition was obviously changing.

So I was all alone with her when she died, and it was extremely upsetting. It wasn’t the gentle “going to sleep” you see in the movies. But at least it was in a place I never had to see again.

I think it would be very hard for loved ones to experience this and have to continue to live in the house where it happened.
posted by elphaba at 6:15 PM on December 16, 2022 [1 favorite]

Today's newspaper had an article that one of the only in-patient hospice facilities in my big city is closing. I think the insurance remuneration is just too low. When my dad was considering hospice about 2 years ago he did not understand that he could not choose, in a sort of preferential way, whether to stay at home or relocate to an in-patient hospice. The hospice intake nurse explained that the situations that qualified for in-patient care included severe intractable pain that required IV pain medication and end stage Alzheimer's when a patient can become hostile, aggressive, and basically has no sleep-wake regimen, making care by family impossible. I'm not sure where this type of patient will go when the in-patient facility closes.

I recommend you ask about "respite" care in a hospice facility associated with the hospice program you choose. My father was told he would be entitled to one 2-day stay in the in-patient facility if my stepmother had to go out of town, for example, but otherwise he would be cared for at home. And he had excellent insurance.

My stepmother could not lift my dad as he became weaker, and also was afraid to leave him alone, and she had to hire nursing assistants from an agency - only twice a week nursing assistant care was provided by the hospice to bathe him and change the sheets. She had to pay out of pocket - he had long-term care insurance, but only "medical" services were covered. A hospice nurse came once a week until he got very weak, when they came twice a week, but would come if called. There was always a hospice nurse on call, even in the middle of the night. My stepmother has a tremendous phobia about medications and I urged her to give him morphine at the end, when he was clearly not going to live another week, but she was so terrified of morphine that I think she might have given him 0.5 mg, an incredibly small dose. By this time the hospice nurse (who monitored the narcotics in the fridge at every visit) was alarmed that he was in pain and severely under-medicated. She did give him this tiny dose on the evening he died, and to this day she thinks she hastened his death. In my opinion it would have been a good thing if it had, but it's likely he felt no relief at all. When my father died at 4:00 in the morning and she woke to find him cold, she called the nursing agency. The nurse arrived at 8:00 and after she pronounced him dead the very next thing she did was take the box of morphine, valium, and other meds, and squirt everything into a chux. I think families appropriate narcotics often enough that this has become a priority.

I also was the primary caretaker for an elderly aunt who had cancer, and who had reached a point where her oncologist said it was time to stop. She lived alone and could no longer manage stairs, and had 1 bathroom upstairs. It was clear she needed to physically move to a nursing home. She had long-term care insurance, which paid a portion of the bill, fortunately, since hospice does not pay for a facility, only the actual hospice services. Since she was in a nursing home, with nurses on site, there was a sort of competition about which physician could direct her care - the nursing home physician or the hospice physician. I had to intervene with threats a few times when the nursing home delayed increasing pain relief doses the hospice physician ordered. There was no box of meds for family to administer, it all had to go through the nursing home pharmacy and be administered by their staff. If your family member moves to a nursing facility it is helpful to befriend the nurses, as most pain meds are PRN, that is, as needed. (By the end she was getting liquid morphine every 4 hours with an additional 2 mg PRN dose, far above the spit my stepmother was giving my dad. So that is one advantage to a facility, in that they are comfortable giving and monitoring pain medications.) I was able to suggest that the nurses actually routinely assess her for pain rather than have her specifically ask, since at times she was too weak to ring the bell. I think this approach helped her die without pain.
posted by citygirl at 6:17 PM on December 16, 2022 [3 favorites]

(noting that I haven't read all the comments, so I may be repeating info here)

My mother died in a dedicated hospice facility (North Carolina, United States) pre-pandemic. They were amazing and loving and caring towards us and her and every question and every issue we had was handled flawlessly. I cooked Easter lunch and carried it all in and fed everyone and they didn't blink. We were able to focus on being with her and each other because there was staff to deal with the medical stuff. I know I'm biased because I had a good experience, but I cannot imagine her having died at home and having that hanging over the family home. Medicare paid for every single cent; my dad never saw a bill, either for care or for facilities.

My wife's grandmother died in in-hospital hospice (also NC, US), because she died the same day she went into the ER for the last time and didn't give us time to move her anywhere else. But the nurses were also amazing and warm and caring and it was incredibly peaceful, especially for a woman who had not had a peaceful life (ask me about my MIL telling god and country that her mother was going to hell in the obit). No idea how billing ran for that, my MIL handled that.

Anecdotally, I've had two friends whose parents died in-home care (one in VA, one in NC). One, it went smoothly but it was hard because as other folks have noted, they had to do all the heavy lifting. The other, it was the middle of the night, her daughter had to administer the final drugs and got rattled and did them in the wrong order and her mom probably died in a lot of pain, and they wish it had been in a facility.
posted by joycehealy at 8:43 PM on December 16, 2022 [1 favorite]

You can memail me if you would like to talk about this process. I attended someone in Europe.
posted by jpziller at 3:04 AM on December 17, 2022

My dad was on home hospice starting in January of this year. Home hospice was good for us, right up until it wasn't.

The hospice program was through a local hospital that he'd been getting home health care through before that, and we loved the staff. The nurse came twice a week, a home health aide came three times weekly, and there was a social worker who came over a week or so.

It was great while he was mostly mentally there. He was dying of COPD and would have a lot of confusion some days, but he could still toilet himself and bathe with the help of the aide. I managed his meals and meds with some help from his wife, but I didn't get much sleep, since by then he was in his own room in a hospital bed, and his wife sleeps heavily.

The last weekend of his life was pretty rough. His wife was away working, so I was alone with him. That weekend he kept tearing his bipap off, so his confusion grew much worse as the CO2 levels in his body rose. It grew into a struggle to get him to take his meds, keep his oxygen line on, etc. By the time his wife got home, he was incoherent, and the hospice nurse very firmly suggested we send him to the respite care facility their program used.

So we did, and the next two days were a heartbreaking struggle. He wasn't coherent, but he wanted to go home, often screaming for us to get him out of there, or trying to escape if left alone even for a moment. Finally, after I talked with the doctor there about his lifelong high drug tolerance, they found the right mix to relax him and let him sleep.

The staff there told me his was the worst case of terminal agitation they had ever seen there, but assured me over and over that it would have been much worse at home, without the quick support in the facility. I think they were right.

As awful as that last weekend was, I'm glad he was at home until then. The whole thing wiped me out in ways I'm still just figuring out, but he was as comfortable as possible until then, in his space, eating the food he loved, with friends dropping by and hanging out. We even had a couple firework shows for him, which I remember being equal parts him grinning like a fool and me chiding him to put his damn mask back on already.

I think home hospice can be great, depending on the physical needs of the patient, and very importantly, how able the caregivers are. One person alone, I wouldn't recommend it.

I will say, make sure the program includes respite care. I really cannot imagine, as agitated as he was at the end, caring for him at home. By that point, he was trying to plug his oxygen line into the wall socket, and trying to take the bipap apart anytime I left the room. If the hospice nurse had not pushed us to send him to the facility, i suspect I would be living with much more guilt than I am now. Because she did, he died quietly, after sleeping through most of the last three days of his life, once they got the meds right.
posted by Vigilant at 7:52 AM on December 17, 2022 [2 favorites]

My home hospice experience was kind of specific, although I guess everyone's is. But it was the early days of the pandemic, which meant that we kind of had to care for my mom at home, because her being in an in-patient facility seemed unthinkable. They had extremely high COVID rates, and they weren't allowing any visitors, and we were pretty desperate to prevent her dying of COVID and/or dying alone. Other specific factors were that my mom wasn't in much pain as far as anyone could tell, but she was partially paralyzed and wasn't able to communicate much. The physical side of things was really hard, even though we had help from home health aides. It was physically demanding, and it was also distressing to have to do things like change diapers. We also had to do a lot of coordinating her care, keeping track of medications, etc., and that was extremely difficult, both because none of us are good at being organized and because we were exhausted and emotionally overwhelmed, which taxed our already minimal organizational capacities. Having said that, at the time it felt traumatic, but in retrospect I don't feel traumatized, and I'm glad we did it given the circumstances. Had it not been for COVID, I think she probably would have been in an in-patient facility, and that would have been better.
posted by ArbitraryAndCapricious at 10:33 AM on December 17, 2022 [1 favorite]

Minor thing that wasn’t minor that I remember: so much laundry. So much. Sometimes it was the one preferred thing that needed to be washed-dried-returned quickly, or all the heavy pads that threw the washer off, or how can we run it if it keeps him awake, and just so much of it.
posted by clew at 11:39 AM on December 17, 2022 [2 favorites]

I pulled together some related AskMe's for another recent question, which may be of interest.

As I mentioned in that reply, we used hospice for both of my parents, mother at home, and father in assisted living/nursing. The option of going to a hospice facility was mentioned for my mother, but if I recall, it was only approved for the very end-of-life stage and in my mother's case, it would have been quite disruptive to move her out of the house just for those final 2 days. Especially after weeks of round-the-clock care and all of the human investment that required. At the point she was labelled "actively dying", the caring actually became easier, as she was unconscious. Of course, this was with 2 adult daughters in attendance full time.

For both parents (this was in FL) hospice support at home was very intermittent, and it was clear that hospice staff were over-scheduled and overworked. Anything outside the 1-2 visits per week by an RN had to be requested, and the scheduling often took days. We never knew when the RN's were coming, and they spent far more time sitting at the kitchen table doing paperwork than they spent with the patient. The RN's would only do meds- and health monitoring-related tasks, so bathing and other tasks were only handled by home health aides who had to be separately requested, and again, came on their schedule, not yours. In my father's case, no one from hospice was around at all in his final 4-5 days, as I don't think they realised that his death was that imminent.

Our experience of hospice was that it was better than having nothing, but it wasn't much. I saw them more as "coaches" than direct care providers. The family was responsible for giving meds, dealing with incontinence, vomit, and whatever came up in the moment. They gave guidance about how to deal with these things, how to lift someone to get them to the toilet, how to feed, how to change the sheets and lay down incontinence pads with someone in the bed. They were a helpful resource, but not a reliable presence. For my mother, the active dying nurse only arrived a couple hours before my mom died.

I will say that Lyn Never is right. Dying at home is not necessarily a beautiful, peaceful experience. My mother was clear about wanting a non-clinical death, but I don't think she fully realized what would be required of her family, and I feel that if she had known how much exhaustion and stress was involved, she might have been less adamant about it. Having said that, I am glad that I was lying next to my mom in her bed when she died, and I am sad that my dad died overnight in a nursing home ward all alone--even though both were unconscious and wouldn't have known the difference. What works for you and your loved one will come down to a range of factors, not all of them in your control.

Also I read this New Yorker/Pro Publica article recently about the hospice industry. Main takeaway is that hospice experience varies widely from state to state, and while it can be quite good, it often isn't.
posted by amusebuche at 2:53 PM on December 17, 2022 [1 favorite]

This has been fascinating and upsetting to read - I'm in my 50s and my parents are in their 80s and this will be coming for us.

I'm seeing lots of discussion of horrible situations, and a few (oblique) mentions of assisted dying, but almost no mentions of actual affirmative euthenasia, legally.

Honest question: Is this because (A) it's not legal in many places, so people have to do clandestine morphine overdoses and hope they don't get caught, or (B) even where it is legal, it's taboo? or (C) the older generation simply would not consier it?
posted by soylent00FF00 at 6:01 PM on December 17, 2022 [2 favorites]

Worth noting that my particular experience with in home hospice was made better by family contributing financial help. This meant I didn't have to work a job while caring for a loved in their final months and that definitely eased the stress. Yes, I was the major caregiver, but because I had no other obligations, it did allow to focus on giving give care. However, even then having other family members and friends were necessary to give me some respite at time.

The other thing is that doing that care was traumatic. I saw, heard, smelled and felt things that stayed with me for a long time and that had me in weekly therapy since April of 2022. It's only in in since beginning October of 2022 that I've felt some respite from that trauma. Again, another major factor with that was family financial help that enabled me to not have to have a steady job this year, was just able to do come contract work with it suited me.

Bottom line, it took a huge amount of familial resources to do in home hospice and for me, as the main caretaker, to have some semblance of mental and emotional recovery after seven months.

I have little experience with facility care, hospice wise, but my wife did spend some time in a facility which did not deliver the kind of care I think most of us would want for our loved ones. Hence her and I being adamant that she spend her last months at home with me, which required those huge financial help from family and friends.
posted by Brandon Blatcher at 6:43 PM on December 17, 2022 [4 favorites]

I’m an oncologist and not a palliative care specialist but counsel a lot patients and families.

Hospice at home is often where people start, and is a good choice for a lot of patients, but is most successfully and comfortably implemented with a wide network of support. The level of care that a patient receives is supposed to scale according to their needs, but the level and quality of service varies widely by agency (and there are some really scammy agencies out there). I am really picky about which agencies I will use and require a lot of accountability from medical directors and nursing. I remain available for consultation for all of my patients on hospice so that they have access to me if there are problems. That has helped in situations where communication wasn’t great, and is something you can ask of your person’s care team.

Caregivers need to be able to have respite because most of us are not trained to take care of 100% of someone’s needs 24 hours a day and it is exhausting. Caregiver burnout in these situations is very real, and while I believe that it is a blessing to care for a loved one in their final days, if that time is tinged with burnout and resentment, a lot of bad feelings are harbored.

There are GIP and inpatient hospices but those are usually reserved for patients who are actively dying or for those whose symptoms cannot be managed at home (eg to admit and get symptoms controlled and possibly resume care at home if appropriate). Sometimes brief respite stays are arranged as well.

Hospice in a skilled facility almost always requires payment for what is called custodial care, and coverage of this by insurance usually varies so much that I can’t estimate from patient to patient what it may be.

I love home hospice for my patients in the right setting. I also know which patients and families are going to have a hard time and will recommend other arrangements when I think that may be what is best. Facility care takes the nursing burden off of family members. It is also something that works better when there are complicated relationships between the patient and their relatives. I have been in situations where have a patient estranged from their adult child and if it can be helped, try to avoid setting up an already-fraught relationship for more difficulty.

I’m happy to answer any other questions you have via Memail.
posted by honeybee413 at 9:07 PM on December 17, 2022 [2 favorites]

We did hospice because my mother hated hospitals after a lifetime of hospital-related trauma.

She lived less than a month. She had no quality of life. She was terribly anxious and scared but because of tumour development in her brain could not communicate her needs. As in mskyle's experience, she was always trying to get up and walk around when she could not do it without falling. Everything, including hygenic care, turning her to prevent bedsores, and the dispensation of morphine and other meds, caused her so much apparent discomfort that it resulted in for instance my brother not giving her her meds at all during his "shifts", or the nurse who came to bathe her skipping baths. Neither of these were good ideas, as I'm sure you can imagine. We spent a lot of time getting lectured by the hospice nurse for doing things wrong, or not doing things.

The only thing about it that was not harrowing was cooking her favorite breakfast for her--a bowl of oatmeal. She lived in a pretty restrained and asectic way, so I very much enjoyed jazzing it up with vanilla extract, butter, milk, and cinnamon, and a few bites of buttery toast with it. During the short time when she would still eat solid foods, I fed this to her by hand because her own hands did not work anymore. I am grateful for the opportunity to have helped her in this way; it was very fulfilling to see her enjoy it.

Please skip the following if you do not want to read traumatic stories. I am typing them because it sounds like you do.

We had been trying so hard to keep her in her own bed and let her get up and walk around. That seemed like the entire point of hospice to us. Then one afternoon she went to the bathroom and simply tipped over on the toilet. Luckily my wife was there and called me in from across the house. She would not be helped off the toilet into her roller and would not speak except to beg for help. I sat on my knees next to the toilet and physically held her up straight--all 180lbs of her--while her fragile flesh tore open under my hands. I remember the sweat dripping into my eyes in huge droplets while we waited for the hospice nurse to arrive. By then her blood was everywhere. What I felt most strongly then was how stupid I had been to ever believe in God.

She had violent spasms in her arm, probably because of the brain involvement. She'd been telling me about these for a while before hospice, but I finally got to witness them when she was in it. Her whole arm would snap back and forth rhythmically and her fingers clench into a fist. It was very violent, and lasted for almost ten minutes. She begged me to kill her during these episodes; sometimes "please kill me" would be the only thing she'd said all day. We had enough morphine to do it, but I just couldn't, y'know?

A few minutes before she died, the nurse and myself turned her in her bed and she just howled for about 40 solid seconds. I think this may have actually been what they call agonal breathing? But it was the messiest, saddest noise I've ever heard.

All of this haunts me. Along with all the stuff we didn't do right or didn't do. And of course mental health providers are all booked out for months. I've had my share of hospital stays, too, and I've got to say I would much prefer to die in a smelly hospital from a morphine overdose from a nurse who sees me as a number than burden anyone who loves me in this way. Unspeakable. I wonder if I will ever be able to separate the memories of my mother while she was living from these horrible phantoms.
posted by the liquid oxygen at 9:04 AM on December 18, 2022 [7 favorites]

My husband died at home in hospice. I thought it was a really positive experience (well as positive as one's spouse dying probably could be).

Here's what I think helped make it a good experience:
- I was home full time and could be his full time care-giver.
- My mom stayed with us and she was basically *my* full-time caregiver, I didn't cook or do laundry, etc. She took care of everything around me and I took care of him, that was the only thing I had to do.
- It was only about 3.5 weeks.
- We had an amazing nurse and an amazing social worker and we connected 100%, like people that I still talk to and have lunch with 5 years later. There was a back-up nurse that came one day when our regular nurse was off, I did not like her. Feel free to say something to the company if you need someone new.
- The hospice supply people are FAST, the hospital bed was gone just a couple hours after my husband was taken away.
- When he did pass it was just me holding his hand, he had been in a coma for almost a week at that point. My mom realized what had happened about 5 minutes later and handled everything (calling everyone that needed to be called).
- His friends and family could all come visit with no limits on number of people and time they could stay, they would just come and hang out like it was a normal day, telling jokes, eating, reading stupid reddit stories aloud. One friend would come every morning for about two hours and just hold his hand and read one of his favorite books aloud.

If you are doing home you need to be prepared to deal with bodily functions and be 100% ok with that. Pee is going to happen on your furniture, they will give you chucks, always put down the chucks, always. When he was still able to use the bathroom, I would literally stand in front of him on the toilet so he could lean on me. He was never alone, ever.

The nurse only comes for a little bit so you are the one that has to deal with stuff in the middle of the night, you can't just press a call button and have multiple people to help. If you don't feel like you can do that you should think about center based care.

Maybe we were really lucky, again as lucky as one can be when their husband is dying in their 30s. The key is having the right people around you though.
posted by magnetsphere at 10:40 AM on December 18, 2022 [3 favorites]

wow, you guys, thank you so much for all of your deep sharing. This is so very helpful and I'm not sure there's any other way I could have heard so many stories of such intense intimate times.

By giving my thanks I am not in any way trying to wrap up this thread and certainly hope that all who feel moved to share will keep doing so.

I am just so affected by all you have gone through and so grateful that you would give me a window into these hard times, I didn't want to go any longer without saying thank you. Thank You.
posted by Jenny'sCricket at 1:09 PM on December 18, 2022 [7 favorites]

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