I have posted on here many times and answered questions every now and then. Dad passed away Oct 7th 2013 from Liver Cancer . He was in a hospice facility for 11 days until he died. The day before he was admitted he was in the hospital and was talking,eating and very clear headed but his ammonia levels were high and he had been very combative, not eating and wouldn't take his meds for 4 days at his nursing home. ( He was in for a Psych Evaluation.) The hospice worker talked to me about admitting him instead of returning to the nursing home. I agreed to this and arrangements were made. He was transferred later that day and was alert and in good spirits. The next morning he was unresponsive and stayed that way until he passed. They gave him morphine and ativan around the clock. He never got any water but they did cleanse his mouth and moisten it with swabs. It seemed like he could hear me the first few days because I would shake his shoulder and say "dad". His eyes seemed to be moving under his eyelids and his mouth would move slightly. I did ask about them lowering his dosages so he could wake up a little. The nurse said he was getting a very small dosage already. I just wonder if the drugs made him unresponsive and if less was used he could have ate and drank and lived longer. I know it was time for him to go but I'm kinda puzzled about his going from complete alertness and straight into unresponsiveness so quick. The nurses did a Great job. I myself don't know how they do it. They treated dad like he was their baby. So gentle and compassionate. I was just wondering if anyone else had the feeling that death felt a little rushed once their loved one was placed in Hospice.
as I did everyday, regardless. Anyway, That's when 5 staff members surrounded me insisting I sign a DNR. Four hours later he was gone. I am so angry and stressed!!
Yet, in retrospect, I do not hold hospice solely to blame. The bottom line appears to be the real culprit -- $$.
Lingering patients are always costly. Exorbitant pricing makes even a short hospital stay, an unrecoverable cost. So, it's easy to see why hospitals and nursing care facilities would embrace hospice care, because it affords them a financial workaround.
The facility may still house the patient, but has essentially subcontracted them out.
Now, the loss becomes a gain -- for both the facility, and the new caregiver.
How?
Well, hospice is essentially "renting" space for the patient.
Still, how can that be a boon for both businesses? (yes, they are businesses!)
Enter government; you know -- the folks who write the laws that protect us?
Yeah, those folks...who can usually afford to avoid hospice care for themselves, and their own families.
(I have yet to hear of any ranking official being put under hospice care. Have you?)
So, government attempts to solve the problem of terminally ill patients, by ordaining hospice to weed those patients out of the healthcare system. Hospice is granted a stipend (our tax dollars hard at work?) purported to cover a dying patient for up to 6 months of care.
On its face, this idea would appear to make sense. And it might work well, IF it were possible to predict exactly how long a terminal patient will last.
However, such predictions aren't always correct. And so, the long-lingering patient again becomes....a financial problem. And hospice services must be very careful about which patients to accept.
We already know that we're all fallible human beings...and doctors are no exception.
So, just because a patient is declared terminally ill....we can't always be sure.
Then too, the hospice now caring for that not-terminal-enough patient is facing financial loss, should the patient's life be prolonged beyond that 6-month funding window.
Conversely, the short-lived hospice patient is a financial gain for hospice, since the unused funds remain in their coffers....supposedly, to go toward the care of the aforementioned lingerers.
But again -- we're discussing a business...with employees, drug costs, rent, etc
.
So, how do you maintain the business...and still make a profit? (an ice-cold term, under these circumstances!)
By choosing the patient most likely to die within the shortest amount of time, so as not to exceed the government funding, and to actually leave behind an unused balance.
Could this setup actually tempt some hospices into hastening their patients' deaths?
Might the contracting hospital/nursing facility look the other way, as their own bottom line is involved, as well?
And finally, could some hospices even resort to other means of making a profit -- like the sale of human organs, for example?
I know that this post will stimulate some controversy. In fact, I'm hoping for it!
It's hard to say how the new healthcare system will effect the "death industry."
My guess -- it will only make matters worse for those who cannot afford to die under their own terms.
But please, do not carry any guilt at signing the DNR. I have seen the way they pressure family into doing just that -- and sadly...worse.
I'm reading so many heart-wrenching posts, here. Many of us, it seems, are harboring varying degrees of guilt -- and all of it, undeserved!
Any caring human being is most vulnerable (I'm using that word a lot, lately) when facing the loss of their loved ones.
Just like in the old days of the traveling salesman -- a foot in the door almost insures a sale!
And certain hospice workers are trained to do just that -- get that foot in.
Their business is death..and some are very good at it.
I'm not saying that most hospice workers are so calloused. There are wonderful, caring people who work in palliative care. I have known a few, and would trust them with my own life.
But there are also stages to hospice care , and workers trained specifically to handle those stages.
Yes, there are "closers," too....and they are the actual "foot in the door" folks.
I recall once watching a group of them surrounding a poor patient's bed. At the time, it appeared to me to be a loving circle of friends and family....attempting to bring comfort to the ailing patient.
I did not know the man they were "embracing," but something about it....something just didn't feel quite right.
Perhaps, it was because the gathered comforters seemed a little too euphoric for the ominous scene?
Years later, while attending a child's birthday party at a well-known eatery, the reality finally hit me.
Here was a celebration of a life.
But what I'd witnessed years earlier was hardly a celebration of the man's life -- but of it's ending!
It takes a particular type of person to do what I now call "The Chucky" celebration.
I'm sure that not all of them are so morbidly enthralled with the job.
But some are. And what better place to seek employment, than in the care of the most helpless?
I'd like to see more stringent qualifications for people who work with the vulnerable.
Psychological testing should certainly be a part of their tentative employment.
And if anyone suggests that many hospice care workers are medical professionals....remember that more than a few errant nurses have been tagged with the moniker -- "angel of death!"
My harsh approach is not meant to slander any particular form of health care provider.
The truly compassionate caregivers are real "angels." Their work is hard, and often unrewarding. And it takes a great deal of strength to work with the ill, the elderly and the disabled, daily....while trying, all the while, to keep your heart from breaking.
But rather, my goal is to anger the rest of us! Yes, to anger us into action, and to force the changes that must be made!
Remembering our loved ones is a good start. Remember, too, that we may someday find ourselves in the same dire situation.
Fight for the rights of terminal patients and their families, that they're allowed to make their own informed decisions, without being pressured.
What better way to honor the memory of those we've lost?
Let it be on the conscience of those that take it upon themselves to decide that someone should die. As far as I'm concerned if the patient is asking for help that's different. It's a compassionate act. But how many are blindsided by overdoses? They never saw it coming, or worse knew it was happening and couldn't do anything about it.
We asked if they could tell us how long she had, since she was no longer eating or drinking. They said maybe 3 or 4 days. They told my sister Friday night that she was NOT on the 48 hour "watch": she had no skin mottling on her feet, no rattle in her lungs, etc.
Saturday, the remaining family members arrived in early afternoon. Earlier that morning, my sister, who had stayed the night, told me they put a subcutaneous injection port in her arm, so the meds would "last longer". At 3:30 Saturday afternoon, the nurse came in with 2 full sized syringes, not the skinny ones I had used to give her pain and anxiety meds at home. One was half full, the other full. She screwed the full one into the port and injected half, then all of the half full one, then the rest of the first. My mom had never moved, never opened her eyes, never responded at all. There was no reason to give her anything.
I went home to nap, since I was so exhausted. At 6 pm, my daughter called from the hospital. They had told her that mom would probably be gone in 24 hours. I got there about 6:30. My father, sister, and daughter were all around her, each with a hand on her. Mom was laying on her back, a gasping breath coming every minute or so. I laid my head next to hers, listening as her breathing slowed. About ten minutes after I got there, she took her last breath. I have never been so utterly devastated in my life. What a horrible thing to experience. I can't get the image or sound out of my head, nor the look on that nurses face as she euthanized my mother.
I am shaking so bad right now, I can hardly type. I fell apart that night. Totally apart. It wasn't until the next morning that I put it all together. They HAD to use the subcutaneous, because that much morphine in an iv would have killed her in seconds. They had to make it look natural. And how did we go from 3 days on Friday, to 24 hours on Saturday, to dead in 4 hours??
Of course, when I told my sister this, she said she didn't blame them for her dying so quickly. That she was glad it was over quick and that mom didn't have to suffer. I say she should have been allowed to die naturally, with the minimal pain medication. She was murdered, plain and simple.
I won't be able to pursue it legally, but they WILL know that I know what they did. I will never get over this. I will never forget, and never forgive.
My husband lived 5 weeks after being admitted to hospice. My mother was discharged when she improved greatly after 3 months. Hospice has to bill medicare for their services. They do not get a flat fee per patient.
I am so very sorry that you view your mother's death as murder. That has to be unbearably traumatic for you.
Please do not spread false information about how Hospice providers are funded for their work.
Also, I appreciate your sympathy regarding my own loss.
Secondly, I realize that some of my comments could use some clarification, and I'll now attempt that....with references:
Medicare pays for the vast majority of hospice care in the United States. (i)
Hospice care is intended for people with 6 months or less to live if the disease runs its normal course. If you live longer than 6 months, you can still get hospice care,
as long as the hospice medical director or other hospice doctor recertifies that you’re terminally ill. (ii)
In fact, that 6 month period is actually a Medicare rule --
"Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill (with a life expectancy
of 6 months or less)." (iii)
Given just the information above, one might conclude that hospices would be quite diligent, when choosing which patients to accept.
Yet, in recent decades, what began as a movement to improve the end-of-life experience has become more of a commercial enterprise. (iv)
In fact, a 2011 Bloomberg News report noted that the growth in hospice care has been fueled by enrollment bonuses to employees and kickbacks to nursing homes
that refer patients. Investigators alleged that this led hospices to accept patients who weren’t actually eligible for the service. (v)
Personally, offering financial incentives for drumming-up more business, is a practice I find quite chilling!
But, jeanne, here's what I believe is the real problem --
Medicare has capped the average amount of money a hospice can make on a patient -- currently around $25,000 -- which amounts to about 180 days of routine care.
This is NOT a per-patient limit, but is AVERAGED OVER ALL OF THE HOSPICE'S PATIENTS. (vi)
Now, can you see why the hospice company might want the highest volume of patients, with the shortest amount of time remaining?
If you've ever worked in wholesale/retail, jeanne -- especially, dealing in a perishable product -- you'll probably recognize the term, "stock rotation."
(i) washingtonpost/business/economy/2014/12/26/a7d90438-692f-11e4-b053-65cea7903f2e_story.html
(ii) hospicenet/html/medicare.html
(iii) https://www.medicare.gov/pubs/pdf/02154.pdf
(iv) http://www.washingtonpost.com/business/economy/leaving-hospice-care-alive-rising-rates-of-live-discharge-in-the-us-raise-questions-about-quality-of-care/2014/08/06/13a4e7a0-175e-11e4-9e3b-7f2f110c6265_story.html
(v) bloomberg/news/2011-12-06/hospice-care-revealed-as-14-billion-u-s-market.html
(vi) washingtonpost/business/economy/medicare-rules-create-a-booming-business-in-hospice-care-for-people-who-arent-dying/2013/12/26/4ff75bbe-68c9-11e3-ae56-22de072140a2_story.html
Currently, the hospice patient I care for is an older brother. But throughout the years, I've lost my mother, a younger brother, my sister-in-law, and two very close friends -- all under hospice care.
I hope you do not have to go on with the image of a nurse just casually and deliberately giving a lethal dose to your mom...but if there was an error or a failure to respect your and your mom's wishes for how alert she may have wanted to be, you are entitled to know and file complaints at the very least.
'Last month the National Institute for Health and Care Excellence (NICE) published new draft guidance on care for dying adults. The guidance serves partly to fill the gap left by the Liverpool care pathway (LCP), which was phased out in a storm of controversy after the 2013 Neuberger review.
' The well intentioned aim of the LCP was to identify the essential elements of good care from hospices [note: in the UK hospices are specialist care centres designed as an option for terminal patients; they're not the same as the US concept] and transform them into a series of prompts to guide professionals in hospital and community settings. Given that the new draft guidance is almost 300 pages long, one can understand why the Liverpool team thought that condensing this information into a few pages would be helpful. However, the LCP ultimately failed, not because the essential elements were wrong, but because of the way it was used. [personal note: I would add, because of the way it was understood and communicated, i.e. extremely badly] How can we avoid repeating this mistake?
'I recently wrote a paper, published in BMJ Open, which aims to help us understand what went wrong with the implementation of the LCP. We used qualitative data collected from 25 health professionals, who were interviewed about their experiences using integrated care pathways for the dying (including the LCP and its derivatives). Most of the interviewees described benefits of using these pathways, but they related almost exclusively to processes of care and were experienced by the healthcare professionals themselves. Although intended as guides, pathways were often interpreted as protocols. Surprisingly, interviewees did not speak of integrated care pathways as directly benefiting patients or their families by helping to ensure better outcomes in death of bereavement. When patient outcomes were mentioned, it was in the context of harm.
With hindsight it seems extraordinary, if these views were representative of mor widely held opinions, that the lCP became so rapidly and universally accepted. Our data provide insights into how this may have happened. Integrated care pathways for end of life care seemed to have symbolic value for healthcare professionals. They legitimised death as an outcome, provided a positive focus to care, and were used as a signal to herald the change from active to palliative treatment. Patchy education in palliative care may have created a vacuum that allowed a tool for which there was no strong evidence to become accepted and valued.
'Our study provides important messages for the successful development and implementation of future tools to guide care of the dying. Firstly, comprehensive education and training in palliative care is critical. A Royal College of Physicians audit recently found that mandatory training in care of the dying was only required for doctors in 19% of trusts. [note: a "trust" in this context is an operational organisation within the National Health Service]. Without such training, staff are unlikely to be able to use any pathway well or to recognise when it is being used poorly. Secondly, our study highlights the importance of grounding any future tool around patient and carer reported outcomes. Lastly, the study demonstrates the importance of collecting qualitative data in developing future tools that aim to improve care of the dying.'
Flowgo's concern being that her not-terminal mother was intentionally killed by healthcare professionals for their own reasons, it falls outside the scope of the debate on what constitutes good end-of-life care. [You believe that your mother was fit and well yet for some reason killed by her hospital team, yes, is that a fair summary, Flowgo?]
The purpose of the original Liverpool care pathway - so called because it was, literally, written down by a hospital-based team in Liverpool, England - was to help other hospital and general practice medical and nursing teams recognise when patients were going to die and give them a way to make the dying process as gentle and peaceful as possible. That was the idea. The complete pig's breakfast that was made of it by hospitals up and down the land caused a furore, to the extent that it came to represent in the minds of their families atrociously callous neglect of dying patients. On a personal note, both my cousin and a close friend sincerely believe that the LCP was responsible for their respective fathers dying painful and lingering deaths. In my uncle's case, I know that this is not true: his death was an ordeal because he continued, may God bless him, to fight it to the end. In my friend's case, I suspect it is true that the LCP guidelines were misapplied and that comfort measures that ought to have been taken were withheld.
But here is the real crux of the matter: look at that one number given in the article - only 19%, less than one fifth, of health service providers routinely train their medical staff in care of the dying. I don't know if that is also true in US, but I would expect it to be broadly parallel. I would like to know what the figures are for medical teams specialising in care of the elderly; because if training in end-of-life care is not undertaken by approaching 100% of them there is an obvious, yawning gap in their expertise.
To me, here is what we need to focus on. We are caring for people who, by virtue of being old, can be expected to approach death sooner or later. We all die. We know that one day we will have to deal with it. When that day comes, there are some parts of the process that we might expect to be able to control, such as where we would like the dying person to be and what medical interventions the person would want his or her staff to attempt. But there are untold numbers of factors that we can't predict or control, such as how fast the process will happen, what symptoms the dying person will experience or how distressing he or she will find them.
Another important point is that when we witness our loved one dying it is a uniquely horrible experience for us, the families; but it is routine to the health professionals. There they are, calmly injecting our mothers with anxiolytics, and to us it looks like they're wrapping her up and posting her off to the hereafter with not a care in the world. They're not. They're doing their job. Every day they take responsibility for minimising the suffering of dying patients. They care by making it as peaceful as they can.
But finding the fine dividing line between controlling a dying patient's symptoms and hastening death is not simple. It requires agile clinical decision-making every single time. Fail to control the symptoms adequately, and families will witness a horribly distressing death. Overcompensate, and families will fear that their loved ones were in fact killed by the treatment, and lose sight of the knowledge that the person was going to die even without it. These are the issues that medical teams need to understand. Unfortunately, too often, they get tired of explaining what they are doing to relatives and carers, or they lack the communication skills to do it well.
Caregivers and family members need, for their own peace of mind, to meet the health professionals halfway. To do that, they need to prepare themselves for the dying process so that they have informed expectations of what is likely to happen. I'm being wise after the event, here; it's more by luck than judgment that my mother's passing went as gently as it did. We had mucolytics, anxiolytics and injectable sedatives ready to hand but as it turned out she needed none of them. Lucky for me. I would have been extremely reluctant to permit their being given, and I would have had to trust her doctor and nurses. What questions would I be ruminating on now, I wonder?
I have already written to the hospital director. The hospice people have been trying to call for days, hand I just let it go to voicemail. I doubt anything will ever come of it, but I will tell everyone what happened, and write to every person I can, in hopes that others wont have this happen to them. I will never be the same.
I'm sorry so many are in anguish over their loved ones death. I have not faced this yet with my mother and I chose to not be present when others in my family passed on.
It seems a lot of the problem lies in lack of communication between medical staff and family, and also our own preconceived notions of what dying is actually like.
I know that medical personnel are busy, and even tasks at end of life become somewhat routine, but if it was habitual procedure to explain every move they make in the final days and hours I think there would be less blame sent in their direction and fewer families would feel torn apart.
And many of us have Hollywood notions of the end of life from all those deathbed scenes on screen, even those who have perhaps sat with one or two other loved ones can not be prepared for the varying realities of the dying process.
I have tried to read everything I can find surrounding this in order to prepare myself, I would like to encourage others looking ahead to watch a you tube video recommended by others on this site;
Gone from my sight, by Barbara Karnes
I'm done now. I won't be back. I need to try to move on. Thanks for all the discussion.