Is my understanding of hospice care all wrong?

As far as I understand, hospice is an end-of-life thing. It would appear odd to be putting your grandmother in hospice care under these circumstances.

Well, see, that’s the thing, laureth. She would not be alive except for the fact that they keep hospitalizing her, pumping her full of antibiotics and steroids and who knows what else. If left to her own natural course, I believe she would’ve chosen death long ago.

As a hospice worker, I can tell you that hospice is for patients who are actively dying. They choose to go into hospice care and are NOT on machines (although may be on oxygen), (sometimes) No IVs, They have DNR (order for do not resuscitate), and basically are in hospice to be comfortable and die. basically in hospice, what you do for the patient is to make them comfortable, but nothing is done for the purpose of prolonging life.

Meds, of course, are taken in hospice. I’ve seen many patients on antibiotics and the like.

A death from infection can be very painful so I think antibiotics are appropriate. Some of the side effects of unchecked diabetes, extreme thirst, serious itching and neuropathy are also unpleasant so maintaining glucose levels is necessary. She probably shouldn’t be allowed to walk unattended if she is falling but she should be allowed to sit in a chair, walk with assistance and at the very least having her position in bed changed often to prevent painful bed sores.

Besides not taking steps to revive someone who is having an end of life event or keeping someone alive mechanically, hospice care is concerned with the best possible quality of life. That doesn’t mean keeping someone drugged to unconsiousness until they stop breathing.

Hospice has changed in recent years in that it’s instituted earlier now (like 6 months out sometimes). It can also be something of an administrative decision since hospice deaths do not affect the “mortality rate” of a healthcare provider. (MR=deaths/expected deaths based on diagnoses).

I would say diabetes management is pretty routine in terms of medical care procedures (i.e. not extraordinary). Can’t speak for chest infections. In general, though, hospice patients won’t be revived or have major surgery, but they will have care (morphine, oxygen, etc) right to the end in many cases. Preservation of the patient’s dignity is also a priority.

So, probably, the measures she’s receiving (insulin, antibiotics, and stitches) are considered more maintenance care. In the event that she develops additional complications the level of care may not increase.

Go ahead and talk to her caregivers. Her wishes as well as the wishes of the person responsible for her care should definitely be integrated into her care plan. Hospice providers are trained to include that input in the process of delivering care.

Thank you guys so much. I have a much better picture of her care now. She fell trying to get out of bed, she doesn’t walk at all anymore. Again, thanks. It’s very difficult to see her as a shell of the person she was.

If they didn’t address her diabetes, she could need limbs amputated, ruin her kidneys and need dialysis…this would make her suffer more. She’s apparently definitely dying of something and they don’t want to add to those “somethings”. That’s a GOOD thing.

So basically in hospice care they will continue to treat her chronic conditions but if she were to code or be diagnosed with a new illness such as cancer, it would not be treated. Is that correct?

Thank you all so much for this information, it really helps.

I’m no expert but I believe they would NOT code and may or may not treat the cancer. They wouldn’t let her suffer with the effects of cancer if they could avoid it, however, if she were too weak for chemo or radiation therapy, they would probably NOT do that.

@SuperMouse

If she was diagnosed with something different (by a doctor of course), then she could talk to her doctor about her options. However, while she is in hospice, her physical symptoms would be treated so she wouldn’t be in pain…but she wouldn’t really be “diagnosed” with anything. Many symptoms that pop up in hospice patients are consistent with being part of the “dying process” and are treated as such. Hospice is not there to diagnose, only to take away pain.

If a doctor were to diagnose her with something like cancer, then no, hospice does not treat that. She would go there to be at peace and for pain management, but would not be undergoing radiation, chemo, etc.

Thank you seekingwolf, that is great information to have.

I am a nurse-manager for a hospice. Hospice has really changed over the last few years and can get a little confusing..
A Hospice patient is referred to a hospice company when a
primary or hospital MD believes there is a prognosis of six months or less. A DNR is no longer required for hospice
patients. We can not refuse a
patient based on code status.

Medicare still provides and
pays for all the health care and
medications that are unrelated
to the hospice diagnosis. If
your grandmother’s MD
referred her to hospice for
cardiac issues, then her
diabetes treatment could be
treated by her regular MD just
as it was before if that’s what
the family chose to do; and
hospice would treat and pay for cardiac and comfort meds.
Often, hospice assumes total medical care of some patients.
This is after a discussion with
the primary or referring MD
and the family. In these cases,
the treatment of chronic
conditions still continues, it’s
just that hospice MD is treating
instead of primary.
Chronic conditions like diabetes can really affect a
person’s quality of life adversly, and hosice philosophy is to enhance and improve quality of life at end-of-life.
There should be an RN in charge of your grandmother’s care. If you don’t know who she is or you’ve never seen her then ask the nursing home for her/his name and number. She/he will be glad to hear from you. The RN case manager is the one who writes the care plans and talks to the doctors, so she can answer specific questions about your grandmother’s care.
If I can help you with general quesions let me know.

@cherryberry

That’s great that you’re a hospice nurse! I love hospice nurses! You guys are great!

I’m a volunteer worker at a 2 bed facility, although I am pretty sure that we don’t take patients who aren’t DNR. Perhaps it’s because it is a private facility and isn’t as bound to the laws as others. We do have an RN always on duty and volunteers available 24/7. I usually volunteer most when I am at home from college on holidays, so the night nurse doesn’t have to be there.

Thanks for your explanation :) I’m sure that will help a lot.

@cherryberry, additional question: you say “a hospice patient is referred to a hospice company when a primary or hospital MD believes there is a prognosis of 6 months or less.”
But this is not automatic, right? The MD doesn’t necessarily refer, right? The family/patient need to intiate?

The MD doesn’t always refer on his own. Sometimes the family initiates the conversation. Sometimes families call the hospice first, and the hospice goes back to the primary doctor for the referral.

If I understand this situation properly, my uncle (my grandmother’s son) asked to have her admitted into the hospice unit after she was treated for a very serious UTI. We were told when they put her in hospice care (over a year ago) that, as cherryberry said, that she probably had less than six months to live. Her being with us this long has been a very pleasant surprise, but it is difficult to see her suffering the way she is, especially after her latest fall.

@cherryberry, Gimme and I are sisters, that’s why I jumped in here.

It can be hard to watch a loved one live on after their six month prognosis has passed, particularly if they are suffering. Remember that a doctor’s prognosis of six months or less is really just an educated guess. There are many patients on service with my company who have been with us over a year. They still meet the criteria for hospice care, and they are still dying, just not yet…
Because members of the hospice team visit your grandmother frequently, they are probably keeping on top of her medical and comfort care. This improves her quality of life, but it can seem like it’s keeping her going beyond her time. Keeping track of her nutrition, infections, blood glucose levels, and any other needs may or may not be prolonging her life by a few short days or weeks, but it is allowing her to have comfort and dignity at a time when she needs these things most. I know it can be hard, but all you can do is hang in there.