Another hospice question - content warning pain/distress/

[Melissa Louise]

Has anyone experienced a loved one going into hospice very close to death, and it being a very bad experience for loved one and family?

Last year our family had a traumatic experience of hospice, and it's left me with considerable end of life anxiety. Just wondering how common it is, I guess.

Basically, family member had end-stage cancer - pain was unable to be managed, while still conscious she expressed extreme psychological pain also - and verbalized and acted on suicidal desires ( by rolling herself out of bed). She was only put under sedation after more than one of these attempts. 

It was a Catholic hospice - shared wards, nothing like I had imagined. There was no.peacefulness there. It felt less like the hospice I'd heard of, and more like a place to shove the dying so they don't clog up hospital beds. She was in hospital the weeks prior and did not suffer from the same catastrophic loss of dignity while in hospital.

It was a truly horrible death ( I have been at several deaths, none of which were like this one).

Unlucky? Some deaths are like that? Hospice doesn't usually go this way? Good hospice is for people with $$? Never go to Catholic hospice? 

It was such a traumatic thing to watch, I've lost faith in medical management of dying, and given thought to other preparations. Crazy? Sensible?

 

[Pawz4me]

I haven't experienced it, but I have read that bad experiences with hospice happen more often than many people realize. Here in the US most populated areas will have choices of hospice providers, and it's really important to vet them well. I'm so sorry that happened to your family.

[Melissa Louise]

Just now, Pawz4me said:

I haven't experienced it, but I have read that bad experiences with hospice happen more often than many people realize. Here in the US most populated areas will have choices of hospice providers, and it's really important to vet them well. I'm so sorry that happened to your family.

Ok, that's interesting. 

We were unable to vet. There were two options, a bed at one and not the other.

I wonder if she had  considered hospice earlier in her disease there might have been more options. 

But between the terminal diagnosis and death was only weeks. Not much time. 

[Farrar]

I've had personal experiences with hospice that have all been good and know dozens of people who have had positive experiences with hospice. But I do have a friend whose father was moved to hospice case just hours before his death and it sounded like a nightmare experience. She was left feeling very dissatisfied. They were put through a lot of bureaucratic nonsense for no apparent reason and did not manage his pain well, which is a huge part of the point of hospice. I really think it's rare, but definitely not impossible. I'm really sorry that happened to you.

[Innisfree]

I am so sorry.

I've been involved in two hospice cases, one at home, and one, very brief, in the hospital. Neither was like that.

At home, care wasn't provided by the hospice; paid caregivers who were already involved continued to provide the care. Hospice coordinated medication (painkillers were provided), provided a hospital bed, things like that. In the hospital, well, that only lasted a couple of days, but they provided excellent care. It was the same nursing as always, just with a determination that palliative care was the appropriate course, a judgement with which the patient completely concurred.

[Jean in Newcastle]

Hospice here (at least the hospice that my Dad had and the hospice that my mom now has) is not a place.  It's a "program" where hospice nurses, doctors and even chaplains come to where you are - whether you are in a regular hospital (like my dad) or assisted living (like my mom) or at home (like some friends). 

[Melissa Louise]

I wonder if I had unrealistic ideas of hospice? 

I assumed hospice. = dignity, pain management, pastoral care and 'good' death. 

I also wonder if I assumed that a Catholic hospice would be particularly dignified? 

Not really sure if I had inflated ideas of hospice. 

[Melissa Louise]

1 minute ago, Jean in Newcastle said:

Hospice here (at least the hospice that my Dad had and the hospice that my mom now has) is not a place.  It's a "program" where hospice nurses, doctors and even chaplains come to where you are - whether you are in a regular hospital (like my dad) or assisted living (like my mom) or at home (like some friends). 

That was the plan when she was discharged from hospital, but her pain at home was uncontrollable. She was only at home for a day before being sent to hospital-type  hospice

That's interesting. I can see why in the case of ppl who can be managed at home, the program 'hospice' would be generally positive. 

[Melissa Louise]

I didn't see a single priest, nun or chaplain the week or so we were at hospice 🙁 I guess I was pretty shocked by that. 

[Melissa Louise]

Follow up question - what safeguards could a person put in place, should she need not-at-home hospice, to minimise chances of a traumatic experience for her family? Hypothetical right now, of course. 

Edited August 8, 2021 by Melissa Louise

[Jean in Newcastle]

I was just talking to my eldest sister today about the chaplain who came to see my mom a couple of days ago.  My sister had expected that he would have a regular schedule with appointed times to visit specific patients.  But he didn't.  And possibly the nature of hospice makes it difficult to do so?  I don't know.  But he did have a nice visit with my mom though they'd never met before so it's not like there was any relationship there.

The chaplain who came to see my MIL in her nursing home was having a hard time.  I spent more time (over an hour) talking to her and encouraging her.  But hopefully she wouldn't have shown that side of herself and her struggles to someone who was struggling themselves?  I think that these types of jobs are so individual. 

[Pawz4me]

2 minutes ago, Jean in Newcastle said:

Hospice here (at least the hospice that my Dad had and the hospice that my mom now has) is not a place.  It's a "program" where hospice nurses, doctors and even chaplains come to where you are - whether you are in a regular hospital (like my dad) or assisted living (like my mom) or at home (like some friends). 

The two largest hospices in my area offer services in the patient's home and they also each have a campus with "hospice houses" (inpatient rooms).

The bad stories I've read about have almost all centered around patients who were receiving services in their own homes, and most involved the caregiver not being able to get in touch with a nurse/get a nurse to the home in a timely manner when a problem or problems occurred. The problems almost always seemed to involve lack of adequate pain control. (Note: The stories I've read about were not at any of the hospice facilities local to me.) Apparently one of the issues thought to be contributing to problems seems to be that for profit companies have found offering hospice services to be a lucrative thing, and in the quest for profits (surprise, surprise) customer care sometimes suffers. It used to be that almost all hospice services weren't profit driven.

[Jean in Newcastle]

1 minute ago, Melissa Louise said:

Follow up question - what safeguards could a person put in place, should she need not-at-home hospice, to minimise chances of a traumatic experience for her family? Hypothetical right now, of course. 

If they have a pastor/priest/spiritual leader/or even a compassionate person that they already have a relationship with - have them come and spend time with them if possible. 

[Jean in Newcastle]

1 minute ago, Pawz4me said:

The two largest hospices in my area offer services in the patient's home and they also each have a campus with "hospice houses" (inpatient rooms).

The bad stories I've read about have almost all centered around patients who were receiving services in their own homes, and most involved the caregiver not being able to get in touch with a nurse/get a nurse to the home in a timely manner when a problem or problems occurred. The problems almost always seemed to involve lack of adequate pain control. (Note: The stories I've read about were not at any of the hospice facilities local to me.) Apparently one of the issues thought to be contributing to problems seems to be that for profit companies have found offering hospice services to be a lucrative thing, and in the quest for profits (surprise, surprise) customer care sometimes suffers. It used to be that almost all hospice services weren't profit driven.

Yes, the pain control is important.  I actually think that the level of pain meds we had to request hastened my dad's death but he needed that level of pain relief. 

So another answer to Melissa's question - having family members with some medical knowledge if possible to advocate for the patient is important. 

[Melissa Louise]

2 minutes ago, Jean in Newcastle said:

If they have a pastor/priest/spiritual leader/or even a compassionate person that they already have a relationship with - have them come and spend time with them if possible. 

Yeah, I can see that having that person lined up would have been helpful.

I wonder if asking an assertive friend to take on the role of advocate ahead of time would help too. My dad ended up doing a lot of advocating ( it was his sister/ my aunt) and I think that took a toll. 

 

[Melissa Louise]

3 minutes ago, Jean in Newcastle said:

Yes, the pain control is important.  I actually think that the level of pain meds we had to request hastened my dad's death but he needed that level of pain relief. 

So another answer to Melissa's question - having family members with some medical knowledge if possible to advocate for the patient is important. 

Is all painful death a failure of pain management, or are we still in a world where some people's pain can't be managed? I guess I don't know if the hospice failed my aunt or if her pain just couldn't be controlled.  

I wish, this many months on, I could have someone at the hospice talk me through what happened. 

[Jean in Newcastle]

Just now, Melissa Louise said:

Is all painful death a failure of pain management, or are we still in a world where some people's pain can't be managed? I guess I don't know if the hospice failed my aunt or if her pain just couldn't be controlled.  

I wish, this many months on, I could have someone at the hospice talk me through what happened. 

Our hospice program had counseling etc. available for family for a full year afterwards.

I do think that some people's pain can't be managed.  But hopefully a nurse could answer and give you a more detailed answer. 

[Corraleno]

12 minutes ago, Jean in Newcastle said:

Hospice here (at least the hospice that my Dad had and the hospice that my mom now has) is not a place.  It's a "program" where hospice nurses, doctors and even chaplains come to where you are - whether you are in a regular hospital (like my dad) or assisted living (like my mom) or at home (like some friends). 

This was my experience as well. The person had actually been in assisted living for years, due to developmental disabilities rather than illness. He was diagnosed with congestive heart failure but was otherwise in reasonable health and was still going on outings, having meals in the main dining room, etc. The hospice organization provided a hospital bed, visited him regularly, and took over prescribing his meds. If I have any complaint about them, it's that they increased his pain meds to a level that left him quite loopy a lot of the time, even though his only pain was from arthritis, which he'd had for years, not something acute like cancer. Once he started getting very high doses of pain meds he seemed to go downhill much faster, but at least he died peacefully in his bed, in his own apartment, after having a really wonderful day, so that's pretty much the best sort of death one could hope for.

[Melissa Louise]

Just now, Jean in Newcastle said:

Our hospice program had counseling etc. available for family for a full year afterwards.

I do think that some people's pain can't be managed.  But hopefully a nurse could answer and give you a more detailed answer. 

Do you think it would be worth trying to contact the hospice and asking for a debrief-style conversation? It would have to wait until after lockdown, of course. 

There must be a chaplain or priest attached to the hospice - I could go through them? 

[kbutton]

6 minutes ago, Jean in Newcastle said:

I actually think that the level of pain meds we had to request hastened my dad's death but he needed that level of pain relief. 

As I understand it, this is a common thing they try to balance in cases where people have pain when dying (and sometimes in life-threatening situations where pain and lucidity need to be balanced, such as sepsis). 

[Slache]

I've only been in one hospice situation and she came home. I was the neighbor and physically helped move things, make phone calls and run errands.

She came home, slept in the living room for 2 days, hugged her grandkids and died. It was wonderful. Her daughter and I handled the brunt of the work so the doctors just had to do doctor things and she just had to rest. It was all very easy.

[Farrar]

My mother spent much of her professional career doing work around death and dying and she's a bit obsessive over these issues, so I've gotten lots of opinions through her. Her husband spent so long on hospice, they tried to kick him off. He was on hospice for well over a year. It wasn't because he wasn't dying, it was because she - and hospice - did such an incredible job of managing his illness. I mean, also luck, but a lot of it was my mother. He did receive the majority of his hospice care at home. Hospice is a care model that focuses on palliative care above all else. It can be its own facility or floor/ward in a hospital, but it's really an overarching model of care that can be delivered in a variety of places and ways.

In addition to knowing your local hospice options and how palliative care is structured at your local hospital in general, I think the best way to avoid having a traumatic horrible experience is to go on hospice early if possible. People think of hospice as the thing you do in your last days when you can't try anything else and your quality of life has gone out the window. But actually, the best deaths that I know are when people chose hospice for themselves proactively. Obviously that's not always possible, but if you know your death is coming and you'd prefer to focus on quality of life instead of prolonging life, then choose hospice. It will change your whole care model. When hospice is chosen with just a couple of days or even just a few hours left in someone's life, I think it's hard for anything to not be crisis mode, no matter how good a system.

Edited August 8, 2021 by Farrar

[Pawz4me]

7 minutes ago, Melissa Louise said:

Is all painful death a failure of pain management, or are we still in a world where some people's pain can't be managed? I guess I don't know if the hospice failed my aunt or if her pain just couldn't be controlled.

I think it would be hard to know. People respond to pain meds differently. Some types of cancer (particularly if the bones are involved) can be excruciating.

Edited August 8, 2021 by Pawz4me

[Melissa Louise]

3 minutes ago, Slache said:

I've only been in one hospice situation and she came home. I was the neighbor and physically helped move things, make phone calls and run errands.

She came home, slept in the living room for 2 days, hugged her grandkids and died. It was wonderful. Her daughter and I handled the brunt of the work so the doctors just had to do doctor things and she just had to rest. It was all very easy.

I'm so sad my aunty didn't have this. 

She was a wonderful woman who did so much - not just for family but for many. She really didn't deserve the horror she got. 

There was one afternoon when I absolutely hated myself for not being brave enough to end her misery myself 🙁 I feel we let her down so badly. 

 

Edited August 8, 2021 by Melissa Louise

[Frances]

We’ve had two in home hospice experiences, my dad and my FIL, both cancer. Both were absolutely amazing. We couldn’t have asked for more. Both were covered by Medicare, so nothing to do with having money. As far as I know since these were both in rural area, there was no other choice for in-home hospice provider. I think the hospitals in nearby cities had hospice wings, so that would have been an alternative if they didn’t want to be at home, which they both did.

I’m so sorry for your bad experience.

[Melissa Louise]

2 minutes ago, Pawz4me said:

I think it would be hard to know. People respond to pain meds differently. Some types of cancer (particularly if the bones are involved) can be excruciating.

It had spread to her bones, so maybe that's it. 

I am angry it took two suicide attempts before she was put under death-hastening sedation. That's so inhumane. 

[Slache]

19 minutes ago, Melissa Louise said:

Follow up question - what safeguards could a person put in place, should she need not-at-home hospice, to minimise chances of a traumatic experience for her family? Hypothetical right now, of course. 

A very good relationship with your general care provider. Someone assertive to help you through.

9 minutes ago, Melissa Louise said:

Is all painful death a failure of pain management, or are we still in a world where some people's pain can't be managed? 

Some people's pain cannot be managed.

[lauraw4321]

24 minutes ago, Melissa Louise said:

I wonder if I had unrealistic ideas of hospice? 

I assumed hospice. = dignity, pain management, pastoral care and 'good' death. 

I also wonder if I assumed that a Catholic hospice would be particularly dignified? 

Not really sure if I had inflated ideas of hospice. 

I very randomly had to read a Catholic guideline on health care services. I was struck by a few things: 1) the emphasis on suffering joining us with Christ’s suffering. Almost an attitude of suffering is…admirable? 2) the emphasis on being very careful to NOT hasten death. This seems contrary to what hospice typically focuses on. 
 

finally, my hospice experiences were 1) in a private home and 2) in skilled nursing in private room. I can’t imagine it in a ward with lots of people. 

[Pawz4me]

4 minutes ago, Farrar said:

My mother spent much of her professional career doing work around death and dying and she's a bit obsessive over these issues, so I've gotten lots of opinions through her. Her husband spent so long on hospice, they tried to kick him off. He was on hospice for well over a year. It wasn't because he wasn't dying, it was because she - and hospice - did such an incredible job of managing his illness. I mean, also luck, but a lot of it was my mother. He did receive the majority of his hospice care at home. Hospice is a care model that focuses on palliative care above all else. It can be its own facility or floor/ward in a hospital, but it's really an overarching model of care that can be delivered in a variety of places and ways.

In addition to knowing your local hospice options and how palliative care is structured at your local hospital in general, I think the best way to avoid having a traumatic horrible experience is to go on hospice early if possible. People think of hospice as the thing you do in your last days when you can't try anything else and your quality of life has gone out the window. But actually, the best deaths that I know are when people chose hospice for themselves proactively. Obviously that's not always possible, but if you know your death is coming and you'd prefer to focus on quality of life instead of prolonging life, then choose hospice. It will change your whole care model. When hospice is chosen with just a couple of days or even just a few hours left in someone's life, I think it's hard for anything to not be crisis mode, no matter how good a system.

I promise I'm not quibbling, but technically hospice care and palliative care are two different things.

One can receive palliative care (pain management is one example, but there are many others) but not be on hospice care. 

[Slache]

4 minutes ago, Melissa Louise said:

I'm so sad my aunty didn't have this. 

She was a wonderful woman who did so much - not just for family but for many. She really didn't deserve the horror she got. 

There was one afternoon when I absolutely hated myself for not being brave enough to end her misery myself 🙁 I feel we let her down so badly. 

 

You didn't. She would not want you to live with that.

[lauraw4321]

26 minutes ago, Melissa Louise said:

I didn't see a single priest, nun or chaplain the week or so we were at hospice 🙁 I guess I was pretty shocked by that. 

Again, randomly read catholic health guidelines recently. That is very unusual. There is a big emphasis on having spiritual leaders available for the faithful. That seems not in line with what I read. I do think bone pain is particularly excruciating and I don’t know there’s a lot that can be done if pain meds don’t help. 

[Frances]

27 minutes ago, Melissa Louise said:

I didn't see a single priest, nun or chaplain the week or so we were at hospice 🙁 I guess I was pretty shocked by that. 

That does seem very strange. My parents are Catholic and although my dad was not in a Catholic hospital, priests and nuns who were part of the hospital chaplain program came to visit him, in addition to his parish priest. When he was on home hospice, his parish priest came by several times, even though he was only in hospice for about ten days before he passed.

[Carrie12345]

I’m sorry. My only experience with hospice was in-home service that didn’t even have a chance to really start. They did prepare the room, including with pain management, but my grandfather passed a day or two before their actual service visits were to start.

My ex’s mom was on hospice care for a very long time in several different locations as her needs changed.

[Jean in Newcastle]

20 minutes ago, Melissa Louise said:

Do you think it would be worth trying to contact the hospice and asking for a debrief-style conversation? It would have to wait until after lockdown, of course. 

There must be a chaplain or priest attached to the hospice - I could go through them? 

I would ask if they provide any grief counseling. A debrief, if done in a nonblaming way might also provide you with some solace. Blaming might just trigger defensiveness on their part and you wouldn’t get the answers you want. 
 

In my dad’s case, the hospice nurse (not a religious person) talked us through what was going on with his body while he was in the process of dying. Knowing what was a normal part of the dying process helped me a lot. Afterwards she stayed and explained what would happen next with his body. 

[Corraleno]

11 minutes ago, Pawz4me said:

I promise I'm not quibbling, but technically hospice care and palliative care are two different things.

One can receive palliative care (pain management is one example, but there are many others) but not be on hospice care. 

My impression is that "hospice care" is mostly about insurance; as soon as my relative went on hospice, insurance picked up 100% of the costs with no copays or deductible. A doctor had to certify that the person was terminally ill and unlikely to survive 1 year, and I think there was a clause about only allowing palliative care, not life-extending treatments. (If he had wanted life-extending treatment he would have had to go off hospice and back onto regular insurance). I think he automatically got 3 months of hospice care, with the possibility of extending for another 3 months. After 6 months, the insurance company required the doctor submit additional paperwork stating that the patient was still terminal and would not recover. The director of the assisted living facility told me that her own mother had gone on and off hospice several times over the course of 2.5 years, and that insurance coverage went back to "normal" copays and limits during the periods she wasn't on hospice.

[Farrar]

21 minutes ago, Pawz4me said:

I promise I'm not quibbling, but technically hospice care and palliative care are two different things.

One can receive palliative care (pain management is one example, but there are many others) but not be on hospice care. 

Oh, I agree. But hospice is a model that focuses on using palliative care with the idea in mind that quality of life in the moment is the most important thing and therefore anything that you can realistically do for pain management makes sense, including amounts of opiates that other patients should not receive or counseling patients not to do treatments that they need to live, for example. Palliative care for non-hospice patients is all about pain management, but has to take into account things like future addiction and long term effects of not taking treatments.

[Jean in Newcastle]

4 minutes ago, Corraleno said:

My impression is that "hospice care" is mostly about insurance; as soon as my relative went on hospice, insurance picked up 100% of the costs with no copays or deductible. A doctor had to certify that the person was terminally ill and unlikely to survive 1 year, and I think there was a clause about only allowing palliative care, not life-extending treatments. (If he had wanted life-extending treatment he would have had to go off hospice and back onto regular insurance). I think he automatically got 3 months of hospice care, with the possibility of extending for another 3 months. After 6 months, the insurance company required the doctor submit additional paperwork stating that the patient was still terminal and would not recover. The director of the assisted living facility told me that her own mother had gone on and off hospice several times over the course of 2.5 years, and that insurance coverage went back to "normal" copays and limits during the periods she wasn't on hospice.

While that's certainly part of it - at least in the US - it's not all.  In the cases I am familiar with, someone on hospice is allowed to be prescribed higher doses of pain meds than are normally allowed by state law.  Also - it comes with certain "perks" - like the provision of access to the hospice chaplaincy program, grief counseling etc. 

[Farrar]

1 minute ago, Jean in Newcastle said:

While that's certainly part of it - at least in the US - it's not all.  In the cases I am familiar with, someone on hospice is allowed to be prescribed higher doses of pain meds than are normally allowed by state law.  Also - it comes with certain "perks" - like the provision of access to the hospice chaplaincy program, grief counseling etc. 

In many hospitals, patients on hospice don't have any visiting rules/restrictions. That was certainly the case for my grandmother.

Edited August 8, 2021 by Farrar

[MooCow]

19 minutes ago, Farrar said:

In many hospitals, patients on hospice don't have any visiting rules/restrictions. That was certainly the case for my grandmother.

Yes, this. When my mom told her nephrologist that she was done with dialysis, she was in the ICU. They let me stay as long as I wanted. The next day she was moved to a regular room and the hospice lady came to her. 

I did not have a good experience with the hospice lady. She was very rude and argued with me. She wanted my mom to come to my house to pass even though I had a little boy that would have been destroyed had his gma died in our home. 

I believe I threw her out. I wanted to complain at the time, but I just did not have the energy. 

[melmichigan]

I spent years working hospice in a hospital setting.  I am so sorry that was your experience, and is one I've only seen when a patient specifically refuses sedation, which sadly I have seen in regards to specific religious beliefs.  

[barnwife]

I am so sorry that was your/her experience. My dad received hospice services at home at the end of his cancer battle. I was there for the last day. Knowing the end was near, he was able to choose receiving services at home vs. in a center-type hospice. The hospice worker i met was fabulous. At that point she was coming daily. During her visit that day she was very clear about pain med options. Realistically, looking back, my dad was probably in more pain than we thought. But he wasn't showing signs of distress/pain. He was sleeping pretty peacefully though his breathing got more and more labored. 

Though we had contacted my parents' priest, he was busy and didn't make it in time to perform Last Rites/Annointing of the sick.

The actual moment of his passing was so peaceful. He just took one last breath, with a sort of extra-large hiccup and was gone. 

Really, I can't say enough good things about his hospice experience, which makes my heart even more for you.

That being said, I have a friend whose mom passed due to cancer and also received hospice services. She wishes they had turned to hospice earlier, instead of waiting till the last couple weeks. And her mother was clearly in a lot of pain, though from conversing with her it certainly seems that the hospice workers/doctors were trying their best to alleviate suffering.

So, yes, hospice services can vary widely, and sometimes, even when workers are trying their best, the end is not as smooth (forgive that word choice, my sleep deprived brain is having trouble coming up with a better one) as most would consider ideal.

[TravelingChris]

2 hours ago, Jean in Newcastle said:

Yes, the pain control is important.  I actually think that the level of pain meds we had to request hastened my dad's death but he needed that level of pain relief. 

So another answer to Melissa's question - having family members with some medical knowledge if possible to advocate for the patient is important. 

I know that that the pain killers that my mom had with ALS and pneumonia hastened her death- we were in the ER. She had thought that she would die at home but it was too painful.   My mom, who was  a belie3ver. was scared=-buty I know from myself that not having enough oxygen is scary.  We were able to be there and the pain meds and the talks that she would see her dog that she had as a girl, she her relatives, she her husband,  and the cat  she lost recently and how we all loved her helped a lot.

[Mrs Tiggywinkle]

1 hour ago, MooCow said:

Yes, this. When my mom told her nephrologist that she was done with dialysis, she was in the ICU. They let me stay as long as I wanted. The next day she was moved to a regular room and the hospice lady came to her. 

I did not have a good experience with the hospice lady. She was very rude and argued with me. She wanted my mom to come to my house to pass even though I had a little boy that would have been destroyed had his gma died in our home. 

I believe I threw her out. I wanted to complain at the time, but I just did not have the energy. 

Unfortunately in many places hospice is really designed to only be done at home.  Insurance does not like to cover extended hospital stays when the patient is on hospice and many areas do not have hospice homes.  There is one locally to me within a two hour drive and they have four beds.  It is actually a huge problem, because more and more families don’t have people that can provide round the clock care even temporarily, don’t have areas in their homes that are able to be turned into a hospice room with a first floor hospital bed and commode and still have privacy, etc.  However the majority of hospitals do not offer hospice care or a hospice wing.  People wind up in nursing homes for end of life care, which often is not a really good setup.  But in a place where there are no hospice homes(which are often lovely, homelike places), and there isn’t family that’s able to put their own lives on hold for however long the dying process takes, there is often no choice.

I love hospice.  Our local hospice is a non profit agency that is made up of some great nurses and social workers.  But they don’t provide round the clock care or have facilities where hospice patients can stay.  It’s often an abrupt shock to the family to learn that the patient usually cannot stay in the hospital once they are moved to hospice services and that there is no round the clock care available.  
 

There is a fantastic hospice nurse on TikTok that answers a lot of hospice and end of life questions. I really appreciate her channel and it’s helped me answer questions for my own patients that I meet as a paramedic and their families. 

It’s HospiceNurseJulie if you want to look it up)

 

Edited August 8, 2021 by Mrs Tiggywinkle

[TravelingChris]

2 hours ago, Pawz4me said:

I think it would be hard to know. People respond to pain meds differently. Some types of cancer (particularly if the bones are involved) can be excruciating.

And also people are reluctant to prescribe pain killers, espescially if they they think the level to stop the pain may kill them.  I think pain relief should be paramount if that is what the patient wants. Many people are afraid of dying in pain.  A lot of those people would rather not have pain and die tomorrow versus have pain for a month and then die.

[TravelingChris]

My FIL was first assigned a nurse to come to the house but got bad enough that he went to the hospital hospice wing.  He got spiritual help from a Korean Christian family who was in the adjacent room.  My oldest brother in law said that they were super nice to my father in law and to him and did provide comfort.  Neither my father in law nor my brother in law were church goers or probably even believers but I know their compassion really struck a cord in my brother in law. 

My father in law passed within a few days of entering the hospital.

[BlsdMama]

3 hours ago, Melissa Louise said:

I wonder if I had unrealistic ideas of hospice? 

I assumed hospice. = dignity, pain management, pastoral care and 'good' death. 

I also wonder if I assumed that a Catholic hospice would be particularly dignified? 

Not really sure if I had inflated ideas of hospice. 

I feel you had realistic expectations and a horrible experience. Someone I love is a hospice nurse. Dignity and a lack of pain are primary goals. She did tell me once she felt there needed to be more coordination between terminal diagnosis and death. She prefers when they have that longer (4-6 month window) because then there is so much comfort in care, understanding relationship. It is as important to her that her patient has a peaceful death as it is the family feels comfort. I am so sorry for your (and her) experience. 

[Loowit]

I have, for the most part, had good experiences with hospice.  We have a local hospice center where loved ones can go.  It is well set up with lots of small waiting/gathering areas, a kitchen for family use, etc.  The rooms are private and made to provide a place for family to spend with their loved one in their last days.  Both of my grandmothers and DH's grandmother passed away there.  My grandfather and DH's grandfather had in home hospice care.  My grandfather actually died on his way to the hospice center, when he was being transported.

The hospice staff were all great, helpful, and compassionate.  The problem we had was with my maternal grandmother.  She had been on prescribed pain pills (addicted) for years for chronic pain.  When they gave them to her in hospice they weren't as effective.  They had a hard time managing her pain, and thus we knew she was in a lot of pain.  Her passing was not peaceful, but the staff did all they could to help.

[MercyA]

I am so sorry. 

My grandfather was not wealthy by any means and the hospice center he stayed in was wonderful. Small, quiet, attentive. At one point he wanted a beer, and they got him one, God bless them. (And when he fell asleep and spilled it, his nurse was so kind while she changed his sheets. His comment? "What a waste." 🙂 )

I have pro-life Catholic friends and some Catholics do tend to view suffering as a "good" in a way that most other Christians do not.

Because I am so ardently pro-life, I used to believe strongly that no death should be hastened by medication or other means, ever. I think a little differently about it now. I don't think torture should be allowed anywhere, most especially not in a hospital or hospice center. And if someone's pain has reached the level of torturous, it's time to relieve that pain in any way possible, even if death comes sooner. I don't believe it's right to let people suffer at the end of life if there are effective means to help them pass more peacefully.

[Eos]

9 hours ago, Melissa Louise said:

I wish, this many months on, I could have someone at the hospice talk me through what happened. 

A debrief seems like it might help you process your trauma.  They may not be at all apologetic or even acknowledge that it was traumatic, but it seems like a good first step for you thinking through and creating a future plan for yourself.  There are lots of resources for planning end of life care.

I do not personally agree with the death-with-dignity aka physician-assisted suicide, but I have known several people who have consciously chosen to end their eating and were well-supported by hospice for pain meds and hydration relief.

 

Edited August 8, 2021 by Harpymom

[TexasProud]

10 hours ago, Jean in Newcastle said:

Hospice here (at least the hospice that my Dad had and the hospice that my mom now has) is not a place.  It's a "program" where hospice nurses, doctors and even chaplains come to where you are - whether you are in a regular hospital (like my dad) or assisted living (like my mom) or at home (like some friends). 

Yes.  Everyone I know, including a close relative that did this, did it at home. They all had VERY positive experiences. I don't think we have hospitals designated as hospice here. It is what Jean said above and it has worked quite well.