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.
I totally understand all the questioning, worrying and living in that grief, but ultimately, I think in most cases, there is simply nothing that could have been done that would have kept our LO with us...sometimes it is just harder to accept for some people....
I can't imagine that our Hospice provider would ever do anything to lessen the amount of time I have with Mama...their goal has always been and continues to be her comfort and care...and helping me feel less alone through it all.
That would be informal as I am not a geriatric or hospice expert by any means, but I am fluent in medicalese and its translation to English.
Not a one, I hope.
This thread has dragged on and on and on and has become very rhetorical. Complaints and innuendos have become the dominant theme.
If these folks are suffering, as Maggie puts it, "guilty consciences", then they either need to seek therapy, find some way of addressing their guilt, and learn to move on. Complaining ad infinitum (or rather ad nauseum) or attempting to shift blame isn't solving their problems.
While I understand that hospice can be for respite on some occasions, it is primarily for end of life care.
If they feel there was negligence, then get the hospice records, have them reviewed by a malpractice attorney, or contact law enforcement. Or, just "ferme les bouches" (shut your mouths). Don't just keep on bitching. It doesn't solve anything, any more than spinning the wheels of a car stuck on ice. You don't go forward or backward; you just keep spinning.
All these guilty consciences need counseling.
I would think if hospice was on the murdering rampage suggested by many on this thread there would be lots of press, congressional investigations, high profile lawsuits and right wing politicians making hay and passing bills left and right to shut down hospice just as they are with planned parenthood.
LadeeC
What is your alternative? Hospice should be against the law? No morphine , no way no how? How should the terminally ill die? Should we ignore a person's end of life directives because we don't agree?
Im not interested in any more horror stories about hospice murdering people. You've all made your point. I Sympathise with all who have lost loved ones. I am no stranger to death in my own family. But it's time to put up or shut up. If not hospice, what then?
I'm done now. I won't be back. I need to try to move on. Thanks for all the discussion.
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 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.
'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?