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Old 05-04-2014, 05:58 AM
 
8,211 posts, read 11,929,872 times
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Here's an interesting - and somewhat scary - report.

Terminal neglect? How some hospices treat dying patients. - The Washington Post
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Old 05-04-2014, 06:10 AM
 
Location: Near a river
16,042 posts, read 18,997,544 times
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Note that all hospice organizations are not alike, contrary to what we would assume. I'm editing an article by someone whose husband had hospice and it was not one of the better ones. She cannot name the one her husband had, of course, due to liability for litigation. In short, hospice in this case did not deliver as promised, falling short in many ways. And in his final weeks, when a nurse was supposed to be by his bedside, it was only for a few hours at a time and not every day.
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Old 05-04-2014, 08:14 AM
 
Location: ☀️ SWFL ⛱ 🌴
2,441 posts, read 1,677,570 times
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Hospice care puts family members in direct contact with death and many people simply cannot handle any aspect of that. Hospice at home sounds like a lovely alternative to dying in an impersonal hospital setting with life prolonging apparatus. The reality is watching a family member dying and having to provide some of that care can be difficult for many.

My FIL died in hospice at home and the nurse was on her way, after being called, when he passed. The nurses visited often, but more importantly, explained every step of death and what to look for, which occurs days leading up to the actual death. Those steps are not pretty. Hospice at home is not for everyone and I'll go one step further and say it's probably not for most. It's difficult, stressful and emotionally draining. It's full contact with death and modern society has managed to distance us from that reality for several generations.

I understand the article is pointing out the failure to provide proper care, but I think hospice is one of those feel good movements that is anything but for many people. They don't want to see death up close but find themselves in that position trying to honor the dying's last wish. What they really want is hospital care 24/7 in a home setting, watching a nurse or aide doing it all, not them. That is not hospice.

My MIL, SIL and DH were at my FIL's side for a week before the end. It was bittersweet and they were glad and grateful to be there together at the end with the support of one another. I think it would have been a far different experience for my MIL to have been there on her own.

Last edited by jean_ji; 05-04-2014 at 08:47 AM..
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Old 05-04-2014, 08:42 AM
 
Location: We_tside PNW (Columbia Gorge) / CO / SA TX / Thailand
22,658 posts, read 40,029,981 times
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I am a hospice advocate and volunteer, and certainly understand it is not for every one. There are as many perceptions and delivery of services as there are humans involved in the process.

As Jean_ji mentions... People respond & set expectations in all kinds of different ways to this particular stress. I do it for the love of the patient and the family. I found some families just plain cannot (or have not) handled dealing with death, often due to unresolved conflict or emotions. Death is not usually the best time to straighten out decades of rage or hurt.

Hospice workers can set family emotions aside and attend to the patient (and the family) from a 3rd party point of view. Everyone is going to handle that differently to an extent.

I know of far more successes than failures both inside and from family side. I am so grateful that I have only had good experiences in using it and referring family and friends.
YMMV
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Old 05-04-2014, 10:00 AM
 
10,819 posts, read 8,077,208 times
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Quote:
Originally Posted by StealthRabbit View Post
I know of far more successes than failures both inside and from family side. I am so grateful that I have only had good experiences in using it and referring family and friends.
As have I. It's good the article exposes the exceptions but by no means should it be taken as a condemnation of the service as a whole.
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Old 05-05-2014, 02:14 AM
 
Location: Florida
19,844 posts, read 19,937,680 times
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We're in the process of having to leave one hospice and signing on with a different one.
The differences are already obvious and we're not even there yet .
There are for profits and non-profits and, not surprisingly, Medicare pays for the largest percentage of hospice patients,
Medicare pays a flat per day fee, regardless of the amount of time spent with any one client.
It's easy to understand that some operators may see this as a golden egg.
It's also easy to understand they may end up killing the goose that laid it.
In defense for even the best ones, it's also easy to understand scheduling problems for the non-institutionalized patients when there is a set number of nurses for an often unpredictable amount of immediate need.
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Old 05-05-2014, 05:12 AM
 
Location: State of Being
35,885 posts, read 67,212,814 times
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Quote:
Originally Posted by old_cold View Post
We're in the process of having to leave one hospice and signing on with a different one.
The differences are already obvious and we're not even there yet .
There are for profits and non-profits and, not surprisingly, Medicare pays for the largest percentage of hospice patients,
Medicare pays a flat per day fee, regardless of the amount of time spent with any one client.
It's easy to understand that some operators may see this as a golden egg.
It's also easy to understand they may end up killing the goose that laid it.
In defense for even the best ones, it's also easy to understand scheduling problems for the non-institutionalized patients when there is a set number of nurses for an often unpredictable amount of immediate need.
Sadly, Medicare reimbursement has escalated the rate of surgery with certain procedures, too.

Physicians are rarely altruists, despite the Norman Rockwell images of 50 years ago, lol.

Our "healthcare continuum" is a mess.

I can totally understand what you mean about killing the golden goose. And, with a limited number of resources, and the guarantee that the reimbursement will be rolling in . . . the profit margin often becomes the focus rather than patient-centered care. Why hire "one more" nurse if an organization can stumble along without him/her?

There is a thin line between barely acceptable patient care and good patient care and that line is what most organizations rely on with paperwork to keep their accreditations.

Some communities are blessed with volunteers who make ALL THE DIFFERENCE in patient care. It is a very individual situation and can vary so much even in one city/town/county.

I hope the new hospice will prove to be a better situation, OLD COLD.
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Old 05-05-2014, 05:23 AM
 
Location: Florida
19,844 posts, read 19,937,680 times
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Quote:
Originally Posted by anifani821 View Post

I hope the new hospice will prove to be a better situation, OLD COLD.
Unfortunately, it's the one we're with that has so totally spoiled us.
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Old 05-05-2014, 05:49 AM
 
Location: Near a river
16,042 posts, read 18,997,544 times
Reputation: 15649
Quote:
Originally Posted by old_cold View Post
We're in the process of having to leave one hospice and signing on with a different one.
The differences are already obvious and we're not even there yet .
There are for profits and non-profits and, not surprisingly, Medicare pays for the largest percentage of hospice patients,
Medicare pays a flat per day fee, regardless of the amount of time spent with any one client.
It's easy to understand that some operators may see this as a golden egg.
It's also easy to understand they may end up killing the goose that laid it.
In defense for even the best ones, it's also easy to understand scheduling problems for the non-institutionalized patients when there is a set number of nurses for an often unpredictable amount of immediate need.
Many people are under the impression that hospice is one homogeneous nonprofit organization with standard levels of care and practice. It's important for us to understand the possible variance(s) in delivery. I hope that the change you're undergoing is a positive one. Unfortunately, for my client, hers was not up to hopes and expectations. Best wishes in your change.
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Old 05-05-2014, 02:44 PM
 
Location: Ponte Vedra Beach FL
14,628 posts, read 17,950,422 times
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One thing the article doesn't really say clearly is that hospice care (which is basically end of life care when everyone agrees the end is near) can be administered in a variety of settings. At home - in a hospital - in a skilled nursing facility - or in a standalone residential hospice facility (perhaps there are others I've forgotten). Particular kinds of settings may be more appropriate for certain patients with certain medical issues.

My husband and I have had 3 parents die while under hospice care - and I offer the following observations.

Home hospice worked very well for my late MIL. She died of kidney failure (when her kidneys failed - she refused dialysis). A death only from kidney failure is a peaceful painless death. The patient just gets sleepier and sleepier. And sleeps more and more. And - one day - the patient goes to sleep - and doesn't wake up. A couple of brief daily visits from a hospice nurse satisfied all of her needs.

My late FIL died in the course of hospice care in a SNF. He had 2 forms of terminal metastatic cancer (painful) and suffered a major stroke about 2 weeks before he died. As a result of the stroke - he had difficulty breathing and clearing his lungs and - a few days before his death - felt like he was "drowning" - and went into total panic (as did we). A morphine IV drip was started immediately. It eased his pain - and his fear - and he nodded off - seemingly in peace - for a couple of days before he stopped breathing and died (no doubt that the morphine hastened this process - that's in part what it's supposed to do).

Note that the transition from his regular SNF care to his end of life care was basically seamless at this (very excellent) SNF. When he was hospitalized after his final stroke - the doctor suggested that he go to a standalone hospice when he was released from the hospital. But the SNF (where he had been a resident for 2+ years) said don't worry - we can handle it. And it did in most expert fashion.

My late mother - who had terminal colon cancer - elected to have home hospice care for a variety of personal reasons I don't care to discuss. I thought the decision was ill-advised - and - IMO - I was right. First off - she was in terrible pain. And the narcotics rules (at least in Florida as I understand them) preclude the administration of IV narcotics in a home setting. So - instead of getting the kind of morphine IV drip that my FIL got - which would have helped her considerably - she only got morphine "drops" administered by mouth from an "eye dropper" on an "as necessary" basis from family members (although she had 24 hour aides - some amounts were paid by Medicare and others paid by family) - none of these people had sufficient legal qualifications under Florida law to administer narcotics to patients). The drops helped some with the pain - but not a whole lot.

Also - as a result of her colon cancer - my mother died when the cancer perforated her colon - and she essentially bled to death at home when she perforated. None of the aides could deal with this. Neither could family members like me and my father. I'm lucky my brother the doctor was there with us - because he was the only one who could deal with it in all the ways it had to be dealt with when it happened. Overall - without a doctor in the family - this is an event that could have traumatized us for years and years.

I am sorry to be somewhat graphic in my descriptions. But graphic might help other people IMO. To make the right choices. Because death isn't always sweet and pretty - like you just "go to sleep" with all your loved ones at your bedside - the way we usually see it in the movies. It can be painful and ugly and disgusting and scary for all involved. Also - I think in a lot of cases that the IV morphine drip is the dying person's "best friend". Make sure that if a loved one of yours is dying from something that is painful - that he or she has ready access to one. Robyn

Last edited by Robyn55; 05-05-2014 at 02:54 PM..
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