After several trips from the nursing home to hospital and back, the final diagnosis is end-stage dementia for my mom. She is being fed with a PEG in her stomach. There is no way she could come home. She finally had to go to nursing home for care (she always said never, but not much choice at this point). DNR is in place and she is on "comfort care" there. One step away from palliative care until her body refuses or unable to take tube feeding anymore. She is on a low dose of morphine and Ativan for comfort. She has given up talking and sleeps most all the time. She has been evaluated for hospice care, but denied as a definitive life span is unknown and the comfort care provides what hospice said they could.
All in all, I am not very pleased with the 'comfort care' situation. Whenever I go to see mom, her curtains are closed and lights are off knowing they are not bothering with her since she is not vocal or responsive. I got to the point to write the director of the facility regarding the state of the room and mom's cleanliness herself. It helped for a week or so, and then slowly went back to the way it was before. I do not know if it is the staff on the floor or the overall tone of the facility.
I know it is only a matter of when for my mom, not 'if'. As long as she is comfortable and kept clean, I can visit talk with her and hold her hand, keep fresh flowers in the room, just to add a touch of home, I feel it is the best I can do for being an advocate.
Just a word of advice, stay with as much "comfort care" as they can provide, as I see the level of care it is and imagine palliative care offers even less attention. My parish priest wanted me to think about that for mom, thought about it and just willing to keep mom's food, hydration, etc. going until her time is right.
Not a great, uplifting answer, but my true feelings.
Thanks everyone. So sorry it took so long to reply! I just never catch a break! Too much to go in to, I may have worded my question wrong, I totally don't know much about this stuff. We had a bad experience with my sister almost 2 years ago on hospice. So when her Dr. suggested Pallative Care, we were not too sure about it. She is in a nursing home, so was curious if anyone had ever experienced it. I appreciate all the answers, it sure is a lot to take in and research.
I think that CountryMouse’s comment about withdrawing maintenance drugs is the answer. My MIL was kept alive for over five years in a NH, until she was 3 months short of 100, by carefully managed drugs for blood pressure etc. She did not want this to happen, which she had said and written clearly. Nursing homes frequently feel that they are legally obliged to ‘do all they can’, and in many cases palliative care is only available for people who have a terminal illness. It is very hard to say that it is ‘the will of God’ that people should be kept alive in this way, and it is a bad result for them, their families and the national budget (there are more positive ways to support ageing than this one).
Find out exactly what they are suggesting and make a decision about what your LO would want. If you start the process, you should still have a chance to stop if you think it’s the wrong thing to do.
When you say, "has anyone ever used this..." it makes me wonder what you mean by palliative care.
Strictly speaking, palliative care is not so much a process or a system or a plan; the distinction is between treatment that is aimed at curing or inhibiting disease, and treatment that is focused on the comfort and wellbeing of a patient. It also protects the patient from unpleasant and pointless investigations such as bone marrow biopsies, gastroscopies and the like.
So, for example, say you had a patient with chronic heart disease who had opted for palliative care, it would be appropriate to give the patient diuretics to relieve the unpleasant symptoms of fluid overload, but not appropriate to subject the patient to surgery, or implant a pacemaker; and once diuretics had ceased to be effective you would discontinue them. You would also withdraw prescriptions for maintenance drugs unless they were demonstrably improving the patient's quality of life.
The thing is. If a person has many years to live, or a good enough chance of full recovery, then it is worth it to him to put up with even quite serious downsides of drugs and other therapies. But once a person is approaching the end of his life, the trade-off doesn't work any more. If a drug gives you headaches or makes you feel sick or stops you enjoying a glass of wine with your dinner, and it isn't going to do much for you, what's the point of taking it? If you're in your sixties and you start losing weight or become anaemic, a colonoscopy is a reasonable investigation; but if you're ninety five and frail, it probably isn't - it's strenuous and uncomfortable and the information to be got from it is of no realistic use to you.
At its starkest, I suppose you could say that standard medicine aims to stave off death for as long as possible, at all costs. Palliative medicine recognises when "the cure is worse than the disease," and aims instead to make the patient's remaining life, and then end of life, as comfortable as possible.
Talk to the medical and nursing team at your loved one's NH and ask them to explain what they're recommending - they may use the term Palliative Care to describe a more clearly defined, formal process. Is your loved one currently receiving active treatment for any specific conditions? Has there recently been a review of his/her prescriptions?
Dear Katie, 'hospice' in the USA seems to be similar to 'palliative care' where I am in Australia, where 'hospice' also has a different meaning. Many many posters have used hospice in a nursing home, and you can see more about it on this site. Click on 'care topics' on the right hand side of the screen. An alphabetic list will come up, and scroll down to 'hospice'. Perhaps because hospice is usually involved when end of life is not too far away, some people on the site blame hospice for expecting and then bringing on the end. But most posters have very positive experiences with hospice support. Both hospice and palliative care are about providing comfort support but not continuing to treat a condition (eg terminal cancer) that cannot be cured.
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All in all, I am not very pleased with the 'comfort care' situation. Whenever I go to see mom, her curtains are closed and lights are off knowing they are not bothering with her since she is not vocal or responsive. I got to the point to write the director of the facility regarding the state of the room and mom's cleanliness herself. It helped for a week or so, and then slowly went back to the way it was before. I do not know if it is the staff on the floor or the overall tone of the facility.
I know it is only a matter of when for my mom, not 'if'. As long as she is comfortable and kept clean, I can visit talk with her and hold her hand, keep fresh flowers in the room, just to add a touch of home, I feel it is the best I can do for being an advocate.
Just a word of advice, stay with as much "comfort care" as they can provide, as I see the level of care it is and imagine palliative care offers even less attention. My parish priest wanted me to think about that for mom, thought about it and just willing to keep mom's food, hydration, etc. going until her time is right.
Not a great, uplifting answer, but my true feelings.
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Find out exactly what they are suggesting and make a decision about what your LO would want. If you start the process, you should still have a chance to stop if you think it’s the wrong thing to do.
I believe from reading here that palliative care is an actual program in some states but I'm uncertain if there would be any benefit for someone already in a nursing home
https://www.agingcare.com/articles/palliative-care-what-is-it-and-how-is-it-different-from-hospice-197744.htm
Strictly speaking, palliative care is not so much a process or a system or a plan; the distinction is between treatment that is aimed at curing or inhibiting disease, and treatment that is focused on the comfort and wellbeing of a patient. It also protects the patient from unpleasant and pointless investigations such as bone marrow biopsies, gastroscopies and the like.
So, for example, say you had a patient with chronic heart disease who had opted for palliative care, it would be appropriate to give the patient diuretics to relieve the unpleasant symptoms of fluid overload, but not appropriate to subject the patient to surgery, or implant a pacemaker; and once diuretics had ceased to be effective you would discontinue them. You would also withdraw prescriptions for maintenance drugs unless they were demonstrably improving the patient's quality of life.
The thing is. If a person has many years to live, or a good enough chance of full recovery, then it is worth it to him to put up with even quite serious downsides of drugs and other therapies. But once a person is approaching the end of his life, the trade-off doesn't work any more. If a drug gives you headaches or makes you feel sick or stops you enjoying a glass of wine with your dinner, and it isn't going to do much for you, what's the point of taking it? If you're in your sixties and you start losing weight or become anaemic, a colonoscopy is a reasonable investigation; but if you're ninety five and frail, it probably isn't - it's strenuous and uncomfortable and the information to be got from it is of no realistic use to you.
At its starkest, I suppose you could say that standard medicine aims to stave off death for as long as possible, at all costs. Palliative medicine recognises when "the cure is worse than the disease," and aims instead to make the patient's remaining life, and then end of life, as comfortable as possible.
Talk to the medical and nursing team at your loved one's NH and ask them to explain what they're recommending - they may use the term Palliative Care to describe a more clearly defined, formal process. Is your loved one currently receiving active treatment for any specific conditions? Has there recently been a review of his/her prescriptions?