Dedaughter, all I can add is that everyone is different, treatments and philosophies are not the same and some medical staff let their personal religeous beliefs interfere. the same naturally goes for relatives, but you clearly made the decision you thought was most compassionate and that is all that matters. most lay people do expect a patient to pass immediately and sometimes that is the case but they also often linger for hours or days, it is totally unpredictable. In your position I would have no regrets.
In the case of Debo's Mom, hospice is required to review her case every so many weeks, I forget how often and if she appears to have a life expectancy of less than six months she can remain in the program. Medicare has certain criteria she must meet, again I can't remember what they are but for example if she continues to loose weight they would keep her even if she is currently up and pottering round the garden. Next visit she may be in bed with raging pneumonia and everyone gathered around the bed. Totally unpredictable.
The use of antibiotics is totally discretionary. They may be offered for example for UTI and chest infections but the patient may already be unconscious from say a brain tumor so it is pointless to try and use them. In many ways taking care of a dying person is like a cook trying out a new recipe, a pinch of this and a spoon of that. the cook knows what usually pleases people so she adds some but on this day one of the testers hates a certain spice so it is back to the drawing board. With a person the nurse knows the principles of care and uses the basics but one patient may experience the oposite effect of a medicine given. Contrary to common opinion in the profession hospice nurses need to be very experienced in many aspects of general medicine, they are the people who see and examine the patient, generally the eyes and ears of the Dr who rarely sees his/her patient after admission if they are unable to leave the house and visit the office. Many other general nurses view the hospice nurse as semi competant unable to hold down a job in the hospital setting. They may not be physically able to manage a 12 hour shift but there skills need to far exceed the smart new graduate. In our hospice most of the nurses were older with lots of life experience and had previously held very responsible supervisory jobs. just my personal whine! New graduates did not last long.
veronica, thank you but this isn't going on now, just that that is what happened at the time and yes, when I was told this, which wasn't at the first, of course, I guess they didn't really know for sure to begin with what would happen; possible it might not have, actually not really sure the doctors ever really got into all the other; it was a nurse who brought that up but you're right, probably a good thing; the main issue with the trach - I somewhat forgot that - was that without it, with the tube in his nose, in his case - can't really imagine them putting one in someone's mouth? - they were having to suction it and they said it was torture; they'd wanted to think he would come out of it to begin with but after that length of time and then with the issue of the kidney failure they began to feel it wasn't as realistic so didn't want to keep doing it; we're not sure either what happened; there was evidence he either started to fall down his steps and tried to stop himself or else he got down them and tried to get back up but somewhere along the way he pulled - not that it was done very well, which is another issue - his hand rail down the side of his steps up - he had been on medication for years to keep him from having a stroke but actually in some ways too long because after so long, which they hadn't told us because they didn't expect him to be on it as long as he was, it causes your blood levels to go down so he'd been having to get blood for a while and when he went in after the fall it was down that low that he had to get it but they thought at the time he'd just lost it because of the fall; they didn't know about all that - another failing I think, it was the same hospital, I think there should have been a record of it. But, yes, we turned off the breathing machine - I didn't have a problem but some other family members did; not sure exactly what you mean about taking time - well, guess I do, but anyway we turned it off quickly - in a way they did kinda push us on that; he was in icu, however, he still didn't really go all that quickly, rather somewhat surprising to me. However, having said that, as part of that, for us, at least, he was put on hospice and yes, I had to sign papers regarding "comfort" measures. The one - besides something else I haven't gotten into here yet - that created the most consternation for us, or at least another family member - was that he'd been on a feeding tube, which was another issue; they were trying to get him off, doing the swallowing test, and he couldn't do it, he almost choked - and part of the comfort, for him, at least, was to no longer even have it but that was because, like you said, we were not expecting him to last more than a week, not like Debo's mom, ending up on hospice for 2 yrs., and he didn't
Carebear, my mom was on hospice for about 2 years (which is unheard of but she went up and down alot through those 2 years). When we first signed on for hospice, the papers we signed asked if you wanted antibiotics used or not. There are certain things that they will use as "comfort" measures even when on hospice. Just like countrymouse said, she was saying it right. But, there are decisions that the patient can make or someone that is making the decisions. I don't know if all hospice organizations in all states are the same, but that was my experience. Here, hospice actually makes you sign a paper telling what life sustaining measures you would like.
In my mom's case she just wanted antibiotics and was given them a few times for things such as an upper respiratory infection and uti's. I do think hospice tries to make the patient comfortable. I hope that helps.
deb this is a very hard time for you watching your father in this condition. With the kidney failure he is not going to survive probably more than a week or less. his other organs you have been told are also failing. Trache or no trache would have made little difference. He needed assistance to breath and it would have just meant the trach would have been connected to the breathing machine instead of a tube in his nose or mouth. I have no idea what caused him to collapse in the cold so it is possible he had a head injury, heart attack or stroke. the hard truth is that with multiple organ failure there is no hope of recovery so consider turning off all the machines and let him find peace. You can take your time doing this so other family members have a chance to say good bye
my dad went on hospice as opposed to having a trach put in; he'd been unconscious?/unresponsive, not really sure the diff there - maybe somebody can fill me in - for a week, at that point, ever since he'd fallen - his eyes had been open but set - his kidneys had shut down - dialysis had been tried to "jump start" them but it hadn't worked so would have been a matter of just keeping him on it otherwise and it's hard on your system - not sure if I can spell this write, have it written down somewhere but don't want to go find it - but rhamadyosis - something like that - had started - his tissues and organs had begun to break down and fail - he'd fallen outside in the cold, which it being cold they said had actually helped keep it from happening more or sooner; he'd been out there possibly around an hour - not really sure if that was better or worse - anyway - was he going to come out of it was the question
Pam I have also seen RT for bone cancer pain and tumor shrinkage and in case palliative removal of a brain tumor. Antibiotics are usually offered for infections on a take it or leave it basis
My FIL was given radiation treatments to ease the pain of his bone cancer, even on Hospice. The cancer worked up his spine one vertebra at a time, there was no saving him, just good comfort care, which meant morphine as needed in the last few months.
This is a good example of somebody having played fast-and-loose with what should be very precise terms. Carebear, my guess is that the person who told you that only "pain medicine" is allowed was translating the term "palliative care" - and translating it inaccurately.
The important distinction of hospice as opposed to general medical care is between treatment that aims to make the patient as comfortable as possible, and treatment that aims to prolong life. So, for example, if a patient in hospice care has a u.t.i., he or she will be much more comfortable if the u.t.i. is treated, so treatment should go ahead. Similarly, certain types of treatment to reduce the size of an inoperable tumour would be appropriate - you're not aiming for a cure, you're alleviating the symptoms that make the patient miserable. What you wouldn't do, though, is order aggressive diagnostic tests or subject a patient to invasive, futile treatment.
The clinician is using a different decision-making process, is what it comes down to. In general medicine, if there is a realistic prospect of a cure it outweighs the disadvantages of treatment - nasty side effects, potential harm, that kind of thing. In hospice, you don't do anything unless it brings some immediate benefit to the patient - but that wouldn't be limited to pain relief alone.
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In the case of Debo's Mom, hospice is required to review her case every so many weeks, I forget how often and if she appears to have a life expectancy of less than six months she can remain in the program. Medicare has certain criteria she must meet, again I can't remember what they are but for example if she continues to loose weight they would keep her even if she is currently up and pottering round the garden. Next visit she may be in bed with raging pneumonia and everyone gathered around the bed. Totally unpredictable.
The use of antibiotics is totally discretionary. They may be offered for example for UTI and chest infections but the patient may already be unconscious from say a brain tumor so it is pointless to try and use them.
In many ways taking care of a dying person is like a cook trying out a new recipe, a pinch of this and a spoon of that. the cook knows what usually pleases people so she adds some but on this day one of the testers hates a certain spice so it is back to the drawing board. With a person the nurse knows the principles of care and uses the basics but one patient may experience the oposite effect of a medicine given. Contrary to common opinion in the profession hospice nurses need to be very experienced in many aspects of general medicine, they are the people who see and examine the patient, generally the eyes and ears of the Dr who rarely sees his/her patient after admission if they are unable to leave the house and visit the office. Many other general nurses view the hospice nurse as semi competant unable to hold down a job in the hospital setting. They may not be physically able to manage a 12 hour shift but there skills need to far exceed the smart new graduate. In our hospice most of the nurses were older with lots of life experience and had previously held very responsible supervisory jobs. just my personal whine! New graduates did not last long.
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In my mom's case she just wanted antibiotics and was given them a few times for things such as an upper respiratory infection and uti's. I do think hospice tries to make the patient comfortable. I hope that helps.
the hard truth is that with multiple organ failure there is no hope of recovery so consider turning off all the machines and let him find peace. You can take your time doing this so other family members have a chance to say good bye
The important distinction of hospice as opposed to general medical care is between treatment that aims to make the patient as comfortable as possible, and treatment that aims to prolong life. So, for example, if a patient in hospice care has a u.t.i., he or she will be much more comfortable if the u.t.i. is treated, so treatment should go ahead. Similarly, certain types of treatment to reduce the size of an inoperable tumour would be appropriate - you're not aiming for a cure, you're alleviating the symptoms that make the patient miserable. What you wouldn't do, though, is order aggressive diagnostic tests or subject a patient to invasive, futile treatment.
The clinician is using a different decision-making process, is what it comes down to. In general medicine, if there is a realistic prospect of a cure it outweighs the disadvantages of treatment - nasty side effects, potential harm, that kind of thing. In hospice, you don't do anything unless it brings some immediate benefit to the patient - but that wouldn't be limited to pain relief alone.