Hospice hustle

[Anonymous]

I have heard good stories (recently from someone in VA, whose wife had end stage dementia). I think the good ones also look out for the family members.

I did not realize that there are "for profit" hospices. Like most things, that poisons the whole experience I am sure. People are in it for the wrong reasons.

[Anonymous]

Anonymous wrote:This is why my parent refused hospice care, kept his regular doctors and Medicare/private supplemental insurance even when we knew he was terminally ill. His doctors continued to treat him even though the focus moved away from “curing” to ensuring quality of life, treating infections and managing pain.

Hospice wouldn’t have provided him with anything other than an occasional nurse visit. He would have to sign away his right to medical care and who would want to do that if they have other options? If you ask me, hospitals push it as a cost-saving measure (for them!).

This isn't how hospice works at all. Both my parents used it because they wanted to die at home. We used a non for profit community hospice that was amazing. Both were able to get radiation and even chemo to relieve symptoms and always kept their same doctors. When my Dad was too bad and we couldn't control is pain at home the hospice got him a room quickly in his local hospital where she directed his care and he was able to pass away peacefully. Hospice 99% of the time is a gift. But families need to mentally be prepared for it. You do most of the care giving. Which was my gift to my parents.

[Anonymous]

Both of my parents died at home under the care of a nonprofit hospice, and it was an incredible gift. It’s been 20 years and I still remember the CNA who helped with my mom, who felt like an absolute angel at the time. We also had a social worker and chaplain as needed.

I was horrified by this article, because it was so far removed from our experience. I hate what the industry has done to these families, and the fact that it might turn people away from what can be a really good thing.

[Anonymous]

Anonymous wrote:We’ve used Capital Caring twice and had a great experience both times.

Capital Caring was quite skeletal for us.

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is why my parent refused hospice care, kept his regular doctors and Medicare/private supplemental insurance even when we knew he was terminally ill. His doctors continued to treat him even though the focus moved away from “curing” to ensuring quality of life, treating infections and managing pain.

Hospice wouldn’t have provided him with anything other than an occasional nurse visit. He would have to sign away his right to medical care and who would want to do that if they have other options? If you ask me, hospitals push it as a cost-saving measure (for them!).

This isn't how hospice works at all. Both my parents used it because they wanted to die at home. We used a non for profit community hospice that was amazing. Both were able to get radiation and even chemo to relieve symptoms and always kept their same doctors. When my Dad was too bad and we couldn't control is pain at home the hospice got him a room quickly in his local hospital where she directed his care and he was able to pass away peacefully. Hospice 99% of the time is a gift. But families need to mentally be prepared for it. You do most of the care giving. Which was my gift to my parents.

So you stayed up 24/7 administrating pain medication every hour on the hour for weeks? Because that was my experience with hospice - this is what they expected from me. Two paramedics who came to put my aunt back in bed at 4 AM after she tried to use the bathroom on her own and couldn’t, pulled me aside and told me that hospice would abuse me, and if I was alone (I was) to GET OUT NOW before I ended up in the hospital myself. That hospice would provide minimal care because my aunt could not afford to pay more than Medicare provided (it was a non-profit). Sure enough, when they were forced to take her in a couple days later due to a bladder blockage due to tumor growth, they ignored the DNR, catheterized her, and then tried to bully me to take her home again, while refusing to put in an IV for pain meds so I would not have to stay up 24/7 to medicate her. She was so weak she could not move her limbs to feed herself, etc. I would not take her home and got calls from the social worker saying things like “she does not want to die in a hospital, how cruel ARE you, etc”. Meanwhile, the reason I was cross-country to begin with was because my mother (my aunt’s sister) had had a heart attack and a stroke. I made the choice at that point to spend time with my ailing parents (father had had a stroke 5 years prior) rather than take my aunt home. Mind you my aunt had given power of attorney to a woman she only knew for 4 months and medical power of attorney to relatives cross-country, so I had no legal ability to make decisions in the first place.

[Anonymous]

In hindsight, my family's experience with my late parents was that for-profit organizations were good with surgeries and high tech testing but bad at hospice. The small non-profits were better at listening to the patient/family and providing palliative care.

[Anonymous]

Hospice as a “movement” was a valuable correction to an excessively physician-controlled system that had evolved to sometimes forcing “curative” care on people who didn’t want it and would not benefit from it, sometimes from good motives and sometimes simply for profit. Putting patients’ needs first, treating them as individuals instead of pincushions, going beyond medicine to address spiritual, social and psychological needs were all important and good ideas.

Hospice as a Medicare benefit was never a good idea. As PP’s have observed, it tends to take control away from patients and their families and put the hospice personnel in charge — exactly the opposite of what the hospice movement advocated for. Because the hospice benefit replaces other Medicare benefits once it is chosen, there can be a great deal of confusion over what is “allowed” and what is not. The result is that patients and families don’t always know what to expect, what they’re entitled to and, most importantly, what they’re giving up. The lack of clear guidance and the power granted to hospice personnel lead to confusing and inequitable results. As PP’s have observed, some hospices do a great job, even providing chemotherapy and radiation for their palliative effects. Others unfortunately demand that patients give up pretty much everything except a steady dose of morphine calculated to help them “die peacefully” whether they are ready to or not. This includes stopping antibiotics, even though untreated infection can make a patient feel far more miserable than they ought to even if they are terminal. Sadly, another effect of the imbalance of power with hospice is that some hospice personnel become controlling and even arrogant (even bullying, as PP’s have noted).

“For profit” hospice? Well, the name says it all.

There are good hospice programs, both outpatient and inpatient. But the average consumer, especially in the midst of dying or losing a loved one, is ill equipped to make an informed evaluation of what is being offered. And “offered” may be the wrong word, since some physicians, faced with impending death, more or less abandon their patients to whatever fate any given hospice program may entail.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:This is why my parent refused hospice care, kept his regular doctors and Medicare/private supplemental insurance even when we knew he was terminally ill. His doctors continued to treat him even though the focus moved away from “curing” to ensuring quality of life, treating infections and managing pain.

Hospice wouldn’t have provided him with anything other than an occasional nurse visit. He would have to sign away his right to medical care and who would want to do that if they have other options? If you ask me, hospitals push it as a cost-saving measure (for them!).

This isn't how hospice works at all. Both my parents used it because they wanted to die at home. We used a non for profit community hospice that was amazing. Both were able to get radiation and even chemo to relieve symptoms and always kept their same doctors. When my Dad was too bad and we couldn't control is pain at home the hospice got him a room quickly in his local hospital where she directed his care and he was able to pass away peacefully. Hospice 99% of the time is a gift. But families need to mentally be prepared for it. You do most of the care giving. Which was my gift to my parents.

So you stayed up 24/7 administrating pain medication every hour on the hour for weeks? Because that was my experience with hospice - this is what they expected from me. Two paramedics who came to put my aunt back in bed at 4 AM after she tried to use the bathroom on her own and couldn’t, pulled me aside and told me that hospice would abuse me, and if I was alone (I was) to GET OUT NOW before I ended up in the hospital myself. That hospice would provide minimal care because my aunt could not afford to pay more than Medicare provided (it was a non-profit). Sure enough, when they were forced to take her in a couple days later due to a bladder blockage due to tumor growth, they ignored the DNR, catheterized her, and then tried to bully me to take her home again, while refusing to put in an IV for pain meds so I would not have to stay up 24/7 to medicate her. She was so weak she could not move her limbs to feed herself, etc. I would not take her home and got calls from the social worker saying things like “she does not want to die in a hospital, how cruel ARE you, etc”. Meanwhile, the reason I was cross-country to begin with was because my mother (my aunt’s sister) had had a heart attack and a stroke. I made the choice at that point to spend time with my ailing parents (father had had a stroke 5 years prior) rather than take my aunt home. Mind you my aunt had given power of attorney to a woman she only knew for 4 months and medical power of attorney to relatives cross-country, so I had no legal ability to make decisions in the first place.

No criticism intended, but if a patient is receiving pain medication every hour on the hour, their pain is not being adequately treated. The model for pain management is a long acting drug with a faster acting drug for breakthrough. If a patient is constantly in breakthrough the baseline medication needs to be adjusted.

Unfortunately, too many patients/caregivers have no idea this is the case and too many physicians put the burden of follow up on them. The result is that people muddle through and suffer necessarily. That this should occur with hospice, whose raison d’etre is pain management, is a scandal.

[Anonymous]

I’m a caregiver for a hospice patient and have been for about 15 months now - she is taking her time dying, as hospice patients often do.

This is a nonprofit organization providing hospice services. The list of services she gets includes meals on wheels - she won’t eat them, the food isn’t up to her expectations but she has to participate to get all the other services. Other services include twice weekly nurse visits, weekly massage (stopped recently because they lost their massage therapist but will start again when they rehire), daily PCA for morning showering etc., 38 hours weekly of PCA assistance (that’s me), all meds and most supplies provided gratis - she pays out of pocket for Purewick so she doesn’t have to sleep in a diaper, and she pays for some of her own supplies like pads and depends and wipes but hospice provides gloves and any kind of higher level medical supplies including a pressure mattress, hospital bed, transfer chair, walker, etc. My patient is lucky to have an eldest daughter who is a retired RN and is the offspring with whom she lives and her primary caregiver who steps up all the days that PCAs and nurses fail to show due to personal illness, family illness, vacation, holiday etc. It’s a huge commitment, had stolen her entire life for the last few years because she cared for her dad until he died a few years ago and I can see it is stealing longevity from her life - most long term family caregivers suffer health issues and many die prematurely, it’s massively stressful. She only gets ~4 hours sleep per night.

Hospice services can be wonderful but I’m sure that isn’t always the case. As with anything, benefits flow from doing careful research.

[Anonymous]

Anonymous wrote:Hospice as a “movement” was a valuable correction to an excessively physician-controlled system that had evolved to sometimes forcing “curative” care on people who didn’t want it and would not benefit from it, sometimes from good motives and sometimes simply for profit. Putting patients’ needs first, treating them as individuals instead of pincushions, going beyond medicine to address spiritual, social and psychological needs were all important and good ideas.

Hospice as a Medicare benefit was never a good idea. As PP’s have observed, it tends to take control away from patients and their families and put the hospice personnel in charge — exactly the opposite of what the hospice movement advocated for. Because the hospice benefit replaces other Medicare benefits once it is chosen, there can be a great deal of confusion over what is “allowed” and what is not. The result is that patients and families don’t always know what to expect, what they’re entitled to and, most importantly, what they’re giving up. The lack of clear guidance and the power granted to hospice personnel lead to confusing and inequitable results. As PP’s have observed, some hospices do a great job, even providing chemotherapy and radiation for their palliative effects. Others unfortunately demand that patients give up pretty much everything except a steady dose of morphine calculated to help them “die peacefully” whether they are ready to or not. This includes stopping antibiotics, even though untreated infection can make a patient feel far more miserable than they ought to even if they are terminal. Sadly, another effect of the imbalance of power with hospice is that some hospice personnel become controlling and even arrogant (even bullying, as PP’s have noted).

“For profit” hospice? Well, the name says it all.

There are good hospice programs, both outpatient and inpatient. But the average consumer, especially in the midst of dying or losing a loved one, is ill equipped to make an informed evaluation of what is being offered. And “offered” may be the wrong word, since some physicians, faced with impending death, more or less abandon their patients to whatever fate any given hospice program may entail.

So.... what is the best solution? If someone wanted to figure this out ahead of time, before they're in a crisis situation. What would you recommend?

[Anonymous]

Anonymous wrote:Hospice as a “movement” was a valuable correction to an excessively physician-controlled system that had evolved to sometimes forcing “curative” care on people who didn’t want it and would not benefit from it, sometimes from good motives and sometimes simply for profit. Putting patients’ needs first, treating them as individuals instead of pincushions, going beyond medicine to address spiritual, social and psychological needs were all important and good ideas.

Hospice as a Medicare benefit was never a good idea. As PP’s have observed, it tends to take control away from patients and their families and put the hospice personnel in charge — exactly the opposite of what the hospice movement advocated for. Because the hospice benefit replaces other Medicare benefits once it is chosen, there can be a great deal of confusion over what is “allowed” and what is not. The result is that patients and families don’t always know what to expect, what they’re entitled to and, most importantly, what they’re giving up. The lack of clear guidance and the power granted to hospice personnel lead to confusing and inequitable results. As PP’s have observed, some hospices do a great job, even providing chemotherapy and radiation for their palliative effects. Others unfortunately demand that patients give up pretty much everything except a steady dose of morphine calculated to help them “die peacefully” whether they are ready to or not. This includes stopping antibiotics, even though untreated infection can make a patient feel far more miserable than they ought to even if they are terminal. Sadly, another effect of the imbalance of power with hospice is that some hospice personnel become controlling and even arrogant (even bullying, as PP’s have noted).

“For profit” hospice? Well, the name says it all.

There are good hospice programs, both outpatient and inpatient. But the average consumer, especially in the midst of dying or losing a loved one, is ill equipped to make an informed evaluation of what is being offered. And “offered” may be the wrong word, since some physicians, faced with impending death, more or less abandon their patients to whatever fate any given hospice program may entail.

This. Well put.

[Anonymous]

Anonymous wrote:I had the total opposite experience with Montgomery Hospice and Talbot Hospice. Not denying this experience just saying in case anyone is reading in a panic. Both were incredibly helpful, compassionate, and competent staffs/organizations.

Are they non profit by any chance?