Never mind. I’ve got the bibliography here.
Information about the Medicare hospice benefit is here.
The specifics about Medicare reimbursement for hospice services is here.
Some general information about the demographics of hospice patients, among other information, is here.
(All of these are PDFs.)
Thank you, MsRobyn. You answered Senegoid’s question better than I could have.
The whole point of hospice is to provide palliative care to terminal patients, so pain management and comfort measures are our main and often only focus.
Normally what happens is a hospice patient’s PCP orders a full stop to most meds that are not providing for the direct comfort of the patient. For instance, blood pressure meds, diuretics and blood thinners such as Coumadin are DC’d, while things such as Maalox are not. Usually if the patient is a diabetic insulin and blood sugar checks continue as before due to the discomfort associated with blood sugar spikes or drops.
Pain management is almost always on an as-needed basis. Medications that are quick-acting, easy to administer and have an easily adjustable dose, such as sublingual liquid morphine are commonly ordered. Anti-anxiety meds such as Ativan and Xanax are also used, but with less regularity. Again, the focus is patient comfort, and we utilize whatever measures we have available to meet that goal.
By “terminal sedation” do you mean euthanasia? Rest assured we do not euthanize anyone. Perish the thought. Our job is to make our clients comfortable. They can, and often do, refuse to eat, drink, or take their meds. We cannot and do not force them to do anything they don’t want to do. However, we still offer.
Oregon has a law allowing physician-assisted suicide. It made a big stink in the papers when it passed, but it’s actually used very rarely. IME ask most most healthy middle-aged people if they would put up with a long and drawn-out death when there are other options, most people say that they would choose to end their own life instead of suffering. In reality people are fighters and rarely just ‘give up’ when faced with the reality of death. In fact I can only recall it happening once, and this person was rather young and healthy, but was confined to facility due to some physical limitations.
Often there are stories of someone who just “gave up” while in hospice care, and decided to end things on their own terms. In my experience this isn’t the case.
I live in the Roseburg area. Sometime this fall or winter I need to drive up to OSU and talk with some academic advisers, maybe I can schedule it for a Friday afternoon and then drive up to PDX… maybe we can have a mini-dopefest some Friday night.
I can’t tell you much, but I have taken my dogs on a couple of hospice visits at the request of patients I knew and their families. One of my dogs was a certified therapy dog, but I let his registration lapse. In Ohio, at least, they can visit at a specific patient’s request without certification.
This is a great program. Many hospice patients are former dog owners who miss their dogs very much and crave this visit. Just a little cuddle or touch means so much. On my last visit, the patient was able to sit in a wheelchair in the garden and he had a tray across his lap; he asked for my smaller dog to sit in the tray so he could put his arms around her. Another friend wanted my other dog in the bed with him.
You will learn if your dog is suited for this kind of visit, and if it turns out that hospice visits are not right, nursing home or hospital visits might work better. But if you do it, you will never regret it.
Thank you for these answers.
I am NOT using “terminal sedation” as a euphemism for euthanasia. Although I am aware that some people ask: What’s the difference?
I understand “palliative sedation” to mean, giving sleeping meds to keep the patient asleep much of the time, or even 24/7 for some limited duration, or similar. “Terminal sedation” means keeping the patient asleep 24/7 until he dies, but NOT doing anything overtly to kill the patient. It falls under the heading of palliative care that the patient might wish for, even though it may hasten death. I’ve often read of “medically induced coma” as a means of longer-term palliative sedation, for longer-term recovery cases, but not intended for the rest of a patient’s life.
And again, I know that the ethicists ask, how “terminal sedation” differs from euthanasia, and there seems to be a consensus in the palliative ethicists community that it doesn’t. I read that to mean, certain patients may just have to suffer needlessly against their own wishes.
So my question is, how is that whole area handled?
Have you ever witnessed a dying person have Deathbed Visions? From what I’ve heard, they are common in the hospice environment. I don’t know what your beliefs are as far as what happens when we die, but have you seen anything, well “spiritual” during the dying process.
Also, I want to add, thank you for doing what you do. My fathers death, back in 2008 was very dignified and pain free thanks to hospice care.
I confess I’ve never heard the term.
Pain management obviously can have sedative side effects, but they are just that – side effects. As I understand it medically-induced comas are used in acute care where a the consciousnessof a patient hinders recovery. As far as I know it’s not used in palliative care. We can use anti-anxiety meds, but not for sedation. We don’t use sedation.
I’m not a hospice worker, but I did write an extensive article a few weeks ago that involved a lot of research, which is how I found the cites I linked to above.
Hospice is a health care environment that is like no other. Most care is rendered to cure; hospice care is intended solely to provide comfort, both to the dying person and his family. I know you understand that part, Senegoid.
Because the goal of hospice is to alleviate suffering, all medication is prescribed with that goal in mind. Sometimes, though, there are unintended consequences that can’t be avoided. Some drugs, such as opiate narcotics given for pain, are given at doses high enough to cause sedation as a side effect, and as organ systems shut down, the body has a harder time breaking down these drugs, so they build up. The sedation is a side effect of the pain medications. That being said, however, some patients do suffer from agitation and extreme anxiety, so this side effect is sometimes desirable even if it’s not deliberately induced.
These issues are actually pretty common. One of the things that hospice nurses, physicians, and pharmacists try to make sure of is that both the patient’s suffering and undesirable side effects are kept to a minimum, and they adjust and titrate and do what they do to make sure that happens.
Here is some more information about this topic.
Yes, deathbed visions are common. I’m fairly agnostic, but I’ve not found any explanations for these. I cannot even begin to explain the experience. I’ve seen pentacostal-types speaking in tongues, am am quite certain they have simply willed their brain to do so. However, when someone is in a deep coma and has been for several weeks, revives for an hour or two and sings hymns or has conversations with an empty room before passing away, the effect on an observer is haunting. I’ve seen more that one of my co-workers leave the building during these visions; they couldnt handle what was happening.
Lancia, thank you and your colleagues for what you do. You gave been caring for my father for almost eight months in home hospice. You are a godsend to our family.
I just want to say thanks, also, for what you do. A very devoted nurse gave hospice care to my mother in the days preceding her death almost three weeks ago. Made my dad’s lot somewhat easier to bear and was a comfort to her children as well.
Deb, don’t know if you’d ever get a chance to see this, but if you do–thank you, from the very bottom of my heart.
Might not the sedation be a highly desirable “side-effect”?
Thanks for the link. I’ve added it to my collection of palliative medicine and issues links.
Some sedation may be good, especially in patients who are agitated or anxious. This is one of the reasons dosages are adjusted. The goal is to keep as much of the good as possible, get rid of as much of the bad as possible, and do this while neither hastening nor delaying death. Hospice care really is more of an art than anything else.
Well, if you stop in Eugene for a road break maybe I can buy you lunch 
No questions, just “Thank you, thank you, thank you” for the work you do. I’ve lost several family members to protracted terminal illness. Hospice and hospice workers made that process as un-horrible as humanly possible (Nothing can make it good, but there’s plenty that can be done to mitigate the bad). Thanks for that.
First off, thanks for what you do. I know it’s hard, but it makes a big difference for people in dire circumstances. My mom has done some hospice volunteer work and found it very rewarding.
My questions:
What is the average remaining lifespan of your patients?
Do you notice patterns in how people cope with their impending deaths that correlate directly with age, gender, race, life experiences, etc.?
Have you ever had a patient who lived far longer than expected, such that hospice care was deemed inappropriate?
What do you hear, through the grapevine, about the Oregon assisted-suicide law? Is it a wise policy? Is it being appropriately implemented?
Do you have many dealings with durable powers of attorney or living wills? If so, are they followed to the letter?
Do you have anything to do with prepping for harvesting from organ donors?
Have you ever had to go to court as a witness regarding any part of your work?
When, if ever, will you tell your wife and kids more about your work?
What has been your funniest experience so far in your career?
What has been your saddest experience?
What experience has most inspired you to keep on going?
Thanks again!
Another ‘thanks’.
Friends and family have benefitted from our local hospice for years. Whether palliative, respite or recovery, Hospice has offered services that helped them all.
Generally someone is placed on hospice when they have less than six months to live. I’ll expand this answer below.
Not really, although I rarely see people fear death (at least the dying person; the family is another matter). The worst are people who, quite frankly, were assholes during their lives. This… whatever you want to call it: style of behavior, personality trait, etc. tends to carry through to the dying process, which makes our lives miserable and frankly increases their own suffering. It’s more sad than anything
Sure. We have no magic clock that counts down the hours, and occasionally get someone in our care that just keeps hanging on. I’ve seen people last on Hospice for a year or more past their initial prognosis.
Frankly, it’s a mostly political issue, and when it was first implemented there was the usual political pissing contest. Oregon is a blue state with big areas of red, unfortunately I live in red area so the local news is quite right-wing. However, after the law was passed and people realized that almost nobody was using it, the controversy faded into the background. I’ve never known of anyone who utilized it.
[For those who don’t know, the law allows someone with a diagnosis of less than six months to live, from two independent physicians, to request a lethal dose of medication. (The patient must be able to self-administer the drugs) Here is more info.]
We do not usually have to deal with with such things. When someone is put on hospice, life support is not usually ordered (defeats the purpose of hospice care). Oregon is one of the few states that utilize a POLST form, something that I would encourage everyone who has access to to fill out and have on hand.
Although, [rant], I have little respect for EMT’s and paramedics as a group. I find them to be ignorant and egotistical. When doing facility work we often had to call the paramedics for numerous issues: chest pain, falls with obvious injury, etc. More often than not EMT’s would totally disregarded a POLST form or even refused to provide care because it’s not “bad enough”. Some don’t know how to read the damn thing. They should be flipping burgers, not providing medical care. The good ones are rare IME. [/Rant]
No.
No. I have had to sign legal documents as a witness to a death, but that is somewhat routine. Once I witnessed a death that was not under hospice care, which involved many hours talking to the police and filling out forms. Kinda weird to think my name is on numerous death certificates out there.
My wife: whenever she asks. She runs a daycare, I take care of dying people. We work in wholly separate worlds. My kids: when they are old enough to understand the realities of death. Right now they know that dad “helps” old people who need it.
“Funny” doesn’t really exist. However, a lot of our clients continue to have a good sense of humor, which is always welcoming.
When I was doing my initial CNA training in 2001 I had a 16 year old girl under my care. I can’t even explain that experience. She was strikingly, unbelievably beautiful to my 19yo eyes. Gorgeous teenage girls were not supposed to be like this… hooked up to numerous machines, unable to walk, talk, or feed themselves… staring at the ceiling with vacant eyes. My patients were supposed to elderly, frail and dying; not young, robust and dying.
See above.
You’re welcome.
What were the negative preconceived notions of hospice workers you had? What negative things did you say about them? Why would facility owners and managers have a bad view of hospice workers?
I, along with most of the posters it seems, have an incredibly positive stereotype of hospice workers. Thanks for what you do!