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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.

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Thank you shinnie and Veronica for the input. It all helps!
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If you are more comfortable having the SNF continue to provide excellent care it is your choice not to continue with hospice care. Hospice does recommend discontinuing that they consider unesessary medications as a matter of policy but it is not written in stone. Most people have strong feelings about the use of morphine in end of life care and this often causes them to refuse hospice care. The fact of the matter is that many patients do get a sudden massive build up of fluid in the lungs close to death and if there is morphine available the patient can get instant relief. I am against the routine use of morphine unless it is needed. For patient's I personally cared for it was always a relief to know there was morphine in the house and the caregiver had been instructed on how to use it. When it may take an hour or more for a nurse to be able to reach a patient in distress the caregiver could immediate administer a dose and give the patient fast relief. They would then be told to call if the dose was not effective and the nurse could give further instructions and make a visit. We were always told to make a visit so they could be there when the patient received their first dose and remain untill the effect became apparent. if morphine is being used for shortness of breath or congestion the dose is usually small. If it is used for pain then after several days the patient's needs will be assessed and an extended relief medication given with morphine being available for break through pain as needed. Pain management is always of paramount importance. The issue of addiction is not addressed because if some one has pain they have a right to e treated. When dealing with an addict minimal amounts are only made available often on a daily basis so it can not be miss used, stolen or sold. For example if a patient has a fentynal patch only one will be provided and a nurse will visit in 72 hours and change it him/her self. Believe it or not but family members do steal drugs from a patient who is terminally ill or the patient may pretend to have spilled the bottle and request more.
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.
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First and foremost, I'm very sorry to hear about your mother. It is a very difficult position to be in and my heart goes out to you. Many people have responded, so what I have to share might be redundant. I have worked in hospice for approximately two years, but am not a nurse. However, my understanding of the medical side is that when someone meets criteria for hospice, comfort focused measures are then priority. The baby asprin was likely discontinued because it is no longer relevant for her condition. If she was expected to live another two years or so, it would be important to include it to prevent stroke. With her terminal illness, it is less likely she will experience a stroke and more likely to experience symptoms related to her terminal condition. Comfort measures focus on these primary symptoms: pain, constipation, breathing distress, and agitation. Someone on hospice doesn't necessarily have a lot of pain now, but pain is always a possible symptom towards the end of a terminal illness. Morphine is a standard medication used in end-of-life care, for pain and to decrease respiratory distress. But not all patient's use it or families allow it. Please emphasize with the hospice team that you'd like to be informed of changes in her plan of care and have changes explained. You don't have to accept what is recommended. Other medications can be used to provide similar results. You are her primary decision maker and have the right to refuse certain treatments. Also, not all hospices are the same. if you're not happy with this current company you have the right to transfer care or revoke at any time. Hospice truly isn't to hasten death, but to make whatever time remaining as comfortable as possible. Please do what you feel is best for your mother and always ask questions. I hope this is helpful.
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Taking away her medicines, not mess*
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Just an update. After visiting with my mom last night and seeing how well she was feeling I was still concerned about the taking away of her other mess by Hospice. Her nurse last night agreed w me and shared that she chose to decline Hospice for her grandmother also, said she definitely felt like they were trying to hasten her death. I'm sure every Hospice worker is different, so NO disrespect for the wonderful work they do.
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
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Stressed

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.
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Stressed123, when my Mom [98] was in long-term-care, my Mom was zonked out mainly to keep from hurting herself. My Mom was unable to walk or even stand up because of a brain injury, but her brain thought she could... so Mom would try to escape from her bed, wheelchair and geri-recliner, and would get scraped up and bruised in the process. So medicating her was for her own safety. It wasn't easy seeing her that way.

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.
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Thanks Babalou, I had heard of palliative care, it just started here in July. I will ask about it today. That sounds like exactly what she needs. I know her doctor said no to the morphine and since she is one of the main doctors for that SNF there must be a reason. My guess is overmedicating. As needed w some supervision sounds better. They had insisted on Xanax 'as needed' but I came there finding her zonked for 8 hr stretches, so I spoke to the head nurse and her doctor and they toned it down. I'm so thankful that she's in a really good place and I'm close by. My heart goes out to those going thru this from afar. Thanks again
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One also has to realize that a parent might not want to admit they are in pain. My Dad [95] always said he was fine, but one could tell from his facial expressions that he was in pain. And with my Mom, one could tell because she was constantly moving around in bed which meant she couldn't find a comfortable position. I was glad when Hospice was assigned.

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.
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Stressed, I'm so sorry that you are facing these decisions. With my mom, who has chf, post stroke, dementia and seemingly stable pleural effusions, we were offered hospice about a year ago. We chose to go with, not Hospice, but palliative care, making sure that " morphine as needed" is on her list of prn medications. That is precisely because, if mom goes south in the middle of the night, they can give her morphine for panic and airway relief.

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!
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Katie! Thank you! Do you have any regrets about it? (If that's not too personal?) I waffle back and forth. They mentioned that I could sign the form and just not date it until after the drain and I was ready, but I was then informed that they went ahead and dated it the minute the drain was put in. It all feels a little pushy and uncomfortable.
If that's the case, then couldn't they just date it IF and when she experiences some pain??
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Thanks for your quick responses. It's the fact that she's in NO pain that makes it difficult for me to grasp all this. I know it's preemptive to have all this on board now so we're not caught with our pants down in the middle of the night should morphine be needed. I just thought the withdrawing of a baby aspirin to prevent a stroke seemed unnecessary. Yes, I am second guessing myself. Thanks for sharing your experience Jeanne, always helps to know you're not alone.
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?
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I rejected hospice for my Dad...even though he was certainly within 6 months of passing.

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.
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BTW, stressed123, my heart goes out to you! It was hard enough to need to give up the direct care of your mother and place her in a care setting, but then within a few weeks to face a hospice decision must feel devastating. This is precisely the situation my sisters and I were in with our mother. It hurts.

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.
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Hospice provides comfort medications only. Morphine does help open airways. It also relieves the pain from the cancer. It relieves the panic. Understand she is not going to get better as the cancer will progress. There will be more pain and that is the primary concern when the patient is terminal.
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My mother was in a nursing home a little over 2 years. After she'd been there a few months her hip broke, she was hospitalized, and sent back to the NH on hospice. She continued to get the good care she'd been getting from NH and additional care from hospice folks. Hospice was awesome about cutting red tape. If they thought she needed a different bed she had it within hours, etc. They also could respond more immediately with drugs to her perceived needs. Mother regained her strength, was no longer considered to have a 6-month prognosis, and was taken off the hospice program. She lived another 2 years. Ironically she was not on hospice when she did die -- that happened very suddenly (for which we are grateful.)

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.
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Can you ask the hospice staff directly ?
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