The Other Side of Hospice, and it's not a good one. A PSA of sorts

[gallahadesquire]

I certainly did not want this to go into Brian's Grandmother's thread, but I feel this warning should be posted.

 

My mother had a massive stroke as the result of an amyloid bleed secondary to her senile Dementia, aka "Alzheimer's". She wound up on the Palliative Care unit after a short ICU stay and determination of her DNR status.

 

There are some bright spots - mildly amusing, depending on how macabre your sense of humour is, that I shall not share at this juncture.

 

We were sitting at her bedside, most of the family, and telling stories. And laughing. [Apparently, this is frowned upon in Palliative Care] A couple of nice ladies came in and asked who was responsible for her medical care [health care proxy]. My stepfather wasn't there, so I stepped in.

 

The told us that they thought she'd be a perfect candidate for Hospice care. She could go home [at this point, we're upping her morphine drip at least once a shift] and Medicare would pay for the whole thing!

 

So I asked: if we transfer her to Hospice, what happens to her inpatient Medical bills?

 

We were told that we would be fully fiscally responsible for any further hospitalizations. I was so stunned, I don't think I said anything except that it wasn't a very good idea, as I knew this would be a terminal hospitalization.

 

The day of her death, about an hour and a half before she died, the same Ladies returned to her room to ask to speak to my Stepfather [who was then 93 years old, but mostly with the program] about the same thing. I almost blew a cerebral aneurysm and asked my two step-brothers, an elder-law lawyer and a nephrologist, to go have a word with them. Rumor has it that they weren't very nice to the Ladies, and the Lawyer brother damn near drilled them a new one.

 

I guess my purpose in writing this is to warn others that Hospice may not be what it appears to be, and to be careful with end-of-life care.

 

Sincerely, Gallahadesquire [M.D.]

 

P.S. The hospital where I had my Pain Relief Training had one of the first in-patient Hospice units in New England, so I know how it can be done as an inpatiend.

[+ honcho]

At the risk of being tedious, I can't at all like what happened to Gallahadesquire, but I'm very grateful he posted it here.

[Guest]

We were told that we would be fully fiscally responsible for any further hospitalizations. I was so stunned, I don't think I said anything except that it wasn't a very good idea, as I knew this would be a terminal hospitalization.

 

I don't think that's the case, at least not in California. One can withdraw from hospice at any time. What is not covered under hospice, however, is any kind of curative care, or going to the hospital for things the hospice program can take care of at home, such as pain control.

[wisconsinguy]

I'm a bit confused. Are you talking about fiscal/medicare/insurance issues or quality care in a hospice situation? I am aware that if there are less expensive alternatives to end of life care, Medicare will not pay for acute care. If there are other issues that arise, yes they will pay. The comment about going back to acute care for pain control is another question I have. That is one of the major objectives of hospice.

[gallahadesquire]

I'm a bit confused. Are you talking about fiscal/medicare/insurance issues or quality care in a hospice situation? I am aware that if there are less expensive alternatives to end of life care, Medicare will not pay for acute care. If there are other issues that arise, yes they will pay. The comment about going back to acute care for pain control is another question I have. That is one of the major objectives of hospice.

 

Thank you for your questions, Wisconsinguy. At the basis was the fact that she had had a terminal event and was in a coma. We were just waiting for her to die. Hospice was inappropriate but offered to us as it would be to the financial gain of the Hospital. Her quality of care at home was not really an issue, as we were strictly on CMO (comfort measures only).

 

For you euthanasia advocates (or opponents), the nurse came in and gave her a bolus of morphine and upped her drip. Right on pharmacological schedule, she died. I timed it. Since euthanasia is illegal, at least in Illinois at the time, we could have taken the doctor and the nurse up on charges of voluntary or involuntary manslaughter, I think. [The local legal beagles can discuss this on their own]. But we achieved her wishes, and she died without waking up.

[Guest]

Hospice is neither "appropriate" nor "inappropriate." It is really a matter of patient preference as to how he or she wants to die (if such wishes are known), in consultation with the family. If the nurse or doctor intentionally gave the patient medication with the intention of killing the patient, that's obviously highly inappropriate, unethical, and illegal. If you feel the doctor or nurse did so intentionally, you may wish to ask the medical board or nursing board to investigate. A criminal/DA investigation seems premature, until the facts are known.

[Mocha]

I can agree with Unicorn and G respectively. It's a matter of personal choice, then again sometimes it's a doctors strong recommendations. However, injuries and other things can happen in hospice. However, medical malpractice is very intricate.

 

I seen first hand the massive amount of emotional, physical, and psychological impact is involved when someone is admitted to hospice because they are unable to walk or stand on their own. It's traumatizing, and most people wouldn't have the know how or patience to care for someone 24/7 in those stages of life. It was a 24/7 duty.

 

The hospice nurses that come to the home are trained to care for people in that stage, but...the ones my grandmother received, some were better than others. The family was always present though. A terminally ill person can become aggressive or refuse to take medications. Even hospice nurses can get impatient, and when that happens, you want to make sure they aren't unnecessarily roughing their patient.

 

I also seen the side where someone doesn't use hospice, with only the family taking care. Its often borderline cruelty. I had an aunt who was being cared for by her daughter...but never received a proper Doctor diagnosis. When a relative pushed to have her taken to a hospital, a brain tumor was discovered and she died 2 days later during the operation. Had it been found out earlier, she might of received life saving treatment.

[+ DERRIK]

My first thoughts are not to sign ANYTHING without getting independent advise (your own elder law attorney)

 

this may be difficult before bring a loved one into a facility BUT after he/she is there - simply don't sign anything