Could I get some input please? My 96 yr old mother has been at the SNF for 10 weeks now after four years at my home. She has masses in her right lung that cause fluid build up in the pleural sac that were needing to be drained pretty constantly. They are assumed to be cancer but no biopsy due to age. She has lost weight and is fragile, needs help bathing and daily care, but she is in NO pain whatsoever. She is only in distress when the fluid builds up and it's time to drain and she can't breath well. Her left lung is clear with no problem. The staff at this SNF are the best and most caring facility I could ever imagine.
One of the nurses brought up hospice to me so that they could make her more comfortable. When the fluid builds she can't breath and gets panicky. So I of course agreed to meet with them.The hospice people came and we're very insistent about morphine and it's ability to relax the lung and ease her breathing. Her doctor said no to morphine when the nurses asked.
Long story short, she is fragile, just got a drain put in yesterday so that fluid wouldn't build, but I had signed for the Hospice so they started today. (They wanted to start after the drain because they didnt want to pay for it)
First thing the nurse at SNF informed me of was that Hospice stopped her baby aspirin, and vitamin D. This confused me. They kept telling me that Hospice doesn't 'hurry' death along, it's just for comfort and if she recovers she can always come off Hospice. So my question is this. Why did they stop the baby aspirin? That's to prevent a stroke. It's not expensive, her doctor wanted her on it. What does that do for comfort? I understand Hospice wouldn't want to pay for the vitamin D, even tho it keeps her from getting depressed. But now I feel uneasy about the aspirin. They didn't remove it because of a bleeding risk.
If you work for Hospice please don't take offense and answer with nasty comments. I've seen some of those comments made to people. I'm only asking for some input from people with similar experiences or words of advice that might help me to understand all this. Thank you all. I've found a lot of help on this site for the last couple of years.
My husband died on hospice at home. They stopped all of his many, many drugs. This was a blessing because it was increasingly difficult for him to take them. Not taking pills was like a little gift. But we did add a couple back in, because it became apparent that they contributed to his comfort.
Not being on baby aspirin or vitamin D will not hurry your mother's death. They do not extend life. If it turns out that your mother shows more signs of depression without the D, ask to have it added back. That would be a comfort measure.
Hospice is paid for by Medicare, and these decisions are not really about cost. Medicare paid for the drain. It was probably just easier to have it done before hospice started so that hospice didn't have to explain why they were doing this procedure. They could probably justified it on the basis of comfort/pain prevention, but easier all around if it could be done before hand.
Hospice is available to people who are not expected to live more than 6 months, if their condition progresses as usual. My mother's condition did not follow the expected pattern. My husband's condition did. They both benefited greatly by having the extra measure of attention and care.
I hope you are not second-guessing your decision to place her in a care center. This further decline confirms your assessment that she needed/needs more than at-home care. None of this is your fault.
The reason was exactly this. They would take him off the meds that were helping him, and only morphine for comfort. Well...hey, if that isn't "hurrying him along" I don't know what else to call it. He needed those meds to help with his conditions. Just masking the "discomfort" of allowing those conditions to move forward without medication wasn't something I could agree to...and if I let hospice in..they would make the decisions. So..I rejected hospice.
My Moms supplemental insurance paid for the drain (we live on the border of two states and all the nearby doctors are in another state, and our state mediCal took too long for an appointment) because Hospice said she needed it but they wouldn't pay for it. I think I am just afraid they will dope her unnecessarily.
It's her time to be free and I know this. I just don't want to feel like I hastened it. I'm told that's a common fear when people first come to Hospice. That, and the fact that her doctor said a definite NO to the morphine. I guess it's out of her hands now. (If she was easier to get ahold of I wouldn't be asking these questions here)
Thank you again. It's hard to let go when you've been their everything for so long, huh?
If that's the case, then couldn't they just date it IF and when she experiences some pain??
As Jeanne said, the hospice decisions are not based on money, as on not extending life. But i have found that the hospice provider we talked to willing to be flexible about certain medications. Please let us know how you are doing!
With removing prescription medicine, don't forget that some meds can keep days if not weeks to get out of one's system. Some people actually feel better being off the meds due to the side effects they had been feeling.
There was nothing more that modern science could do to fix the medical problems for my parents. I know we all wish there was a magic wand.
My Dad probably could have lived a couple months more if he was given a feeding tube as he was aspirating, but I knew Dad would have hated that. He was ready to go see my Mom [98] who had passed on late last year from complications of a serious head trauma in a fall that their home.
My Mom's long-term-care was just down the street and she was getting very good care. Yes, it's good to be close by.
I did not regret the decision. I too felt they were way too pushy.
My dad passed away 2 weeks ago. He died of his heart condition and allows other extreme old age issues.
I would have had a hard time if I had allowed them to take away the meds that he had to have to keep his conditions in whatever control was possible.
I do not regret the choice to keep hospice out of the decisions.
I talked to my Mom's Dr today and voiced my concerns. She was surprised and agreed that there was no reason to take away her aspirin to prevent stroke and her vitamin D. She asked what reason they gave and I said they told me it was a "burden to swallow pills". She never minds swallowing a pill. As I said, she has no pain whatsoever.
To conclude, I appreciate Hospice and the comfort they provide to people. But at this time I felt pushed unnecessarily and hurried. If others are feeling the same way, please ask questions, don't feel uncomfortable. I feel like there is another way right now. Next month or week it may change. Thanks everyone
Hospice is available in the worst of the slums in the inner cities and although the nurses are usually respected it can be necessary for an armed security officer to accompany a nurse on home visits. I did have one ocassion to request police
help dealing with a patient who had become violent and they were able to
provide much needed assistance
Hospice actively discourages the use of artificial feeding either IV or by tube and may agree to drain a fluid build up a few times but not routinely because this is considered active treatment. Naturally if you want to continue with this treatment you are free to do so but without hospice. When someone already has a feeding tube it is left in place and the feeding continued until it becomes apparent the patient is no longer absorbing the feed
I realize this has little to do with someone refusing to let his nails be cut but they are things about hospice that those who have never used their services tend to know little about and base their decisions on hearsay.