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I am starting a new post because the previous one on "death hastened by hospice" has so many replies. Do people expect medical euthanasia when they accept hospice? Does hospice staff aim for 24/7 sleep using sedating meds? When did this become the standard of care? When we call hospice should we be prepared to have our loved one be medicated heavily and die soon? Why is the word "comfortable" left so open to interpretation? Why is "agitated" as minor as slight tossing and turning during sleep? What has happened to hospice?

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Novallentjsmom

Thank you, Novallentjsmom.

I agree.

Yes, it was the spiritual guidance you and my friend and the dying person all needed from a supposedly experienced and supposedly kind and caring hospice work.

After all, guidance is all they can offer, and it is for their guidance that their services are requested.

Just like you, my friend said her mother's passing was very traumatic for her to experience all alone.

Yes, the hospice agency should be held accountable for not having someone show up.
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Heather10:

thank you. It makes me so sad to hear that this happened to your friend. It shouldn’t happen ever.

I wish they could be held accountable for not showing up at all. I feel like many people say to me “well they couldn’t have stopped him from dying” but that’s not what was needed. Guidance comfort and maybe explanations about what I was seeing would have been nice. Or taking care of him spiritually when he was still alive. I know I will harbor this anger forever. It’s sad.
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Novallentjsmom:

I am so sorry to hear your story. It is a common one, sadly.

I have a friend who contacted her assigned hospice workers because she felt her mother was about to die.

She was an only child and was alone with the mother. She has no medical training and was beside herself about what to do and what to expect.

The hospice nurse had not shown up that night and when called she said she could not come because she had unexpected family issues to tend to. The agency had no back up to send.

The woman died within hours. This woman is also angry and the treatment she received.
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My mother passed away in May 2018. Our experience with hospice could not have been better. (It was through the Visiting Nurse Service of NY.) She was at home and died around 8-9 weeks after we signed her up, following a 4-year odyssey of breast cancer, a broken vertebra, and then a massive stroke which left her bedridden and incontinent and with 24/7 care at home.

In her case, the hospice staff were very conservative with medications. They gave her a few tiny doses of morphine when she was having trouble breathing, but no way was it even close to euthanasia. I'm sure hospice providers vary considerably. (Personally, I want euthanasia if I get to the point where I have no quality of life. Bring it on!)
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My father passed away in January after being placed on hospice care 2 months prior in our home. The hospice never sent a priest out to give him the anointing of the sick like they told my dad they would. I never saw a social worker and we saw a nurse occasionally unless I called for something. They did come clean him every other day though.

My dad had a mini stroke in November and after was on Home health care for physical therapy, a nurse and occupational therapy. They were all able to get him up walking talking he seemed fine. The doctor came in a week later and said that since he refuses the hospital she wanted to put him on in home hospice care and we could leave it at any time. Since my brother had such a great Experience with the hospice he had before he passed many years prior we thought it would be a good idea. My dad refused the hospital and usually the paramedics wouldn’t take him because he could answer all of their cognitive questions even when he had a mini stroke.

My dad passed January 14,2018 and he woke up that morning feeling sick and vomiting. I called the 24 hr emergency line 6 times between 7:45 am and 2:34 pm when he passed and a nurse never showed up. We were told over the phone only to give him Ativan and morphine which he refused saying he wasn’t in any pain he wasn’t taking that. They never told us why we should give him that nor that he was actively dying and I was never given the signs of end of life.

My fathers passing was very traumatic. He was sitting up and went unconscious but still had a pulse. As soon as he went unconscious brown fluid poured out of his mouth and nose continuously. My mother, my 26 year old daughter and I were all yelling his name and freaking out. I finally sat next to him grabbed his hand and said daddy with tears pouring down my face. At this point the fluid stopped as did his heartbeat and his head laid over on my shoulder. The nurse arrived 5 minutes after he passed. Hospice failed my dad and they failed our family. They weren’t there when we needed them most. If I would have only known he was dying I would have laid with him and comforted him, right before all this happened I was upstairs making him his favorite banana pudding thinking it would make him feel better.

I still attend grief counseling but my grief will never get better better because I am so angry about that day and the events that took place. No matter how much I try that anger won’t leave.
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I'm so sorry to hear about so many horrible, sad and frustrating experiences with hospice. I was near tears at so many of your posts. it's emotional enough trying to get the best care for your loved one but to have an unresponsive, uncommunicative or overmedicating hospice staff is unconscionable. I didn't know much about hospice when we put my mom into their care. She was in a nice assisted living facility but fell a couple of times, complained about constipation, etc. and after 5 trips to the ER in one month, with one 5 day hospital stay, for a relatively minor complaint, having a nurse come to her instead of the stress on everyone, transporting her to the ER and waiting for hours... seemed the best for everyone. Every time anyone came to see her - nurse, aide, chaplain, social worker, I would get a phone call. They'd call before they saw her and if there were any concerns I had, they'd call after the visit to tell me about her condition. I saw her 4-5 days/week also and she had a personal daytime caregiver. She would refuse meds if she didn't want them - and the AL would call me every time she did. They never forced drugs on her and she knew what she was taking. When she was in pain, she wanted the pain meds. When she wasn't, she'd refuse them. I don't feel that the meds hastened her death. The meds definitely made her more comfortable. She was in constant pain before hospice and couldn't get comfortable, couldn't sleep, etc. When she started requesting the pain meds, it made her so much more pleasant. She enjoyed eating, she enjoyed seeing people. She wasn't getting physically better but she felt better.

The AL told us that some hospice companies were better than others. We were happy with the one we went with. Sometimes I felt they communicated too often but I was always glad to get the updates. If you have any concerns or bad feelings about the hospice company you're using, switch! My mom had COPD, CHF and PAD. She was maintaining, eating, etc but she became less mobile because of her PAD - her legs wouldn't support her any longer. At the end of COPD, carbon monoxide builds up in the brain which causes the sleep/lack of consciousness. When she got to the phase, she only lived 2-3 days. The hospice nurses called me when they were afraid she would live the night. No meds had been administered. Her O2 was on max - her body simply couldn't sustain life any longer. It was peaceful - I was with her - watching each labored breath until there were no more breaths. I think her brain stopped functioning hours before her breathing stopped because of the CO. I'm glad hospice was there for us - they made her more comfortable and were very attentive.
--Suzanne
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Carla B

Actually, my friend was determined by all qualified medical professionals to be unlikely to have more than a year to live and that treatments were not working well. That is how she was admitted to palliative/hospice care.

Apparently the doctors were wrong about how long she could survive.

With rehabilitative care she is still going strong, although her illness is not curable.

She is not the type of lady that likes to be sedated. So she is willing to put up with some pain to avoid it.

She takes advantage of meditation, acupuncture, massage and other techniques to relieve pain.

Thank you for the Kudos and sending some back to you, too.

Here is a link with some information about who is accepted into hospice.

http://palliativedoctors.org/hospice/care

From the link: [ "What is Hospice Care?

There may come a time when efforts to cure or slow an illness are not working and may be more harmful than helpful. If that time comes, you should know that there's a type of palliative care—called hospice—that can help ensure your final months of life are as good and fulfilling as they can be for you and your loved ones.

Hospice is not about giving up. It's about giving you comfort, control, dignity, and quality of life.

Eligibility

Insurers, Medicare, and Medicaid will generally provide coverage for hospice care if your doctors determine you ( likely) have 6 months (a year in some cases) or less to live if your illness follows its normal course.
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Heather - the account you shared about your friend is shocking! I'm appalled that any family would place their loved one in hospice unnecessarily and that hospice would accept a person who did not appear to be terminally ill. Kudos to you for putting a stop to the craziness and getting your friend out of there. I'm glad she is doing well.
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CarlaCB wrote:

["Heather - I'm thinking about what happened to my mother in hospice. Her immobility was not caused by her pain medication. Her immobility was one of the first signs that she was dying. She came home from the hospital bedridden. I tried to get her up only once - she could not stand up even with me holding her up. She couldn't use the bedside commode even with help. She couldn't turn or lift herself either. Even using the bedpan was too much - she had to be catheterized."]

Carla CB:

In your case your mother was already immobile and could not even stand.

I am talking about people who are mobile, I am talking about people who are still walking and mentally alert, and who request NOT to be drugged who may not even be in much pain, but are given sleep medications. Or, who are at tolerable levels of pain and specifically request NOT to have pain meds.

The person I am caring for called me, desperate and in a panic, requesting that I take over of medical and financial POA, after her children put her in a hospice facility that was drugging her to induce sleep. She pretended to swallow the pills, so she could avoid them and stay alert.

She then contacted me. Her children were all fighting over who gets what, etc., according to her, and she did not trust them. She felt the children wanted to hasten her decline. Whether or not this is true, is not for me to decide. The children may have had good intentions, but were simply naive.

However, she clearly did not want to sleep all the time. That is why she called me.

I moved her out of hospice and into a rehab facility. That was four years ago. She is does not have dementia and walks fine.

There are some wonderful hospice facilities, but some that are not so wonderful.

Some simply obey the requests of the medical POA, particularly if a patient is difficult. Others will not and will suggest that a patient be put in rehab, if that is a better option.

The key is to be aware that some of the not so good facilities will do what is best for them and not the patient.

That is why the courts are filled with neglect lawsuits regarding such facilities. If one simply goes down to their local court house they will be able to read the horror stories.

Also many times, the workers at the not so good facilities will clean a patient up when they know the patterns of the family visits but if a hidden camera is used, the patient is not attended to at other times.

In your case, you mother was obviously declining rapidly. You and your family were there attending to her, too. So you were obviously very ALERT TO HER NEEDS.

Your mother was lucky to have you.
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I’m so sorry for your loss MadGdaughter. I am glad you finally got answers. Our family experience was a little like yours, we knew MIL was dying but we didn’t know it would be so soon because nothing was communicated to us by the family member in charge, the person who was primarily taking care of her. The night before she died, I asked him if the nurse had given an indication of how much time she had left and he said no. I found out shortly after she passed that the nurse had told told him she wouldn’t make it through the weekend. We had a problem with lack of communication amongst each other and information being withheld. We knew her heart could give out at any time but we expected/hoped that when the end was near, we would be informed and allowed to say goodbye. But like I said, there was communication issues and when she was in her final days, that information wasn’t shared so we were all blindsided when she died. At a time like this, communication is so important.
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Hi everyone. My grandmother passed away 6 days after going on hospice. I was clearly very upset and confused when I found this forum and posted. For my tone I apologize. I’ve done a lot of thinking/studying on this subject. I’m thankful my grandmother (I’m told) wasn’t in pain or distress. That is a blessing. I do now realize that all my family members were shocked. No one knew she was days away from dying. When I walked into the scene I believe her children were just realizing their mother would not wake up. She went into a deep sleep as soon as hospice came in and did their thing. She had been talking and there was shock that she would not be waking up. My big issue with this: the family should be very clear about what’s going to happen as soon as hospice walks in. My understanding is that wasn’t made clear. The hospice nurses were wonderful and brought great comfort to my family. I’m in my 30’s and have a lot to learn about this process. It’s unnerving to watch a loved one’s body shut down but I feel knowing more about this inevitability for all of us brings a little comfort to a mysterious life event. I appreciate all of your wisdom as caregivers and will continue monitoring these topics. By the time (hopefully a long time from now) that my parents health declines I will hopefully be more prepared mentally and emotionally to give the support needed.
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In 2013, when my stepmom was mostly "out of it" on morphine in a hospice facility (she asked to be drugged into sleep because of the pain), she was bathed, changed, and had her bedding changed daily. She was turned several times per day and even and had her limbs exercised regularly. Nurses came in every half hour to check on her. She had a TV, DVD player, and stereo in her room, all provided by hospice. The only "fight" I ever had with the nurses was to make them leave the window open - unlike most elderly people, my stepmom preferred cool temperatures.

My mom already sleeps 20-24 hours a day at home, and mostly refuses to get out of bed. She refuses to have her limbs exercised and eats barely anything. She is not allowed to take anything stronger than Tylenol because of her kidney failure, so it has nothing to do with being drugged. Her attitude did not change when she spent time in hospice for my respite break, and I don't imagine her attitude will change when she goes into full-time hospice care next week. The hospice room where she will stay also has a huge flat screen TV, DVD player, and stereo, as well as two huge windows looking out onto the garden. There is a main living area where she could cook or eat her meal in a homey dining atmosphere, or watch TV, do puzzles, play the piano, and engage in any number of other activities if she wanted to. She can have food any time of the day or night if she wants it - even if it's 3 in the morning. I can even bring the pets to visit.

I am eternally grateful for everything hospice services have provided to my family.
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My bro died many years ago but as he lay in his bed he looked anything but neglected - his beard was trimmed, his hair and body were clean, his room and bedding smelled fresh, he looked.... comfortable. I'm so sorry for those whose experience was so different from ours.
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Heather - I'm thinking about what happened to my mother in hospice. Her immobility was not caused by her pain medication. Her immobility was one of the first signs that she was dying. She came home from the hospital bedridden. I tried to get her up only once - she could not stand up even with me holding her up. She couldn't use the bedside commode even with help. She couldn't turn or lift herself either. Even using the bedpan was too much - she had to be catheterized.

My mother was sleeping maybe 20 hours per day when she came home. That was without pain meds. It certainly didn't allow us to withdraw attention from her. She woke up every hour needing a sip of water, her head or legs adjusted, more blankets or less, etc. And we took those opportunities to get her into clean clothes, change her bedding, wash her, apply powder and lotion to her skin, feed her a few bites of whatever she could eat, etc.

We started giving her pain meds when she started moaning with pain. We knew she was dying - we just wanted her to be comfortable. I hope it's not true that meds are given in hospice facilities to allow staff to ignore the needs of sick patients. It certainly wasn't true when we used hospice to allow Mom to die at home.
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If a patient is being heavily sedated to the point where they are sleeping and immobile 24/7, this definitely will hasten death.

Being immobile causes severe muscle wasting and rapidly.

Please research what happens to the human body when it is lying in bed for too long. It has been likened to smoking two packs of cigarettes per day.

Being immobile is very unhealthy and it sends the person into a musculoskeletal downward spiral that is very difficult to recover from.

Yes, I think hospice, in the USA and perhaps other countries, needs a severe overhaul.

Yes, it is easier for the staff, if a patient is drugged into mainly sleeping. There is then no need to feed them, bath them, change clothing from day clothing to pajamas, provide exercise or entertainment, etc.

All these things will without a doubt hasten death.
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CharlieBee, I am so sorry this happened to your family. I don’t even know what to say, except that. I also found in my experience there was a huge gap between what the Hospice provider website promised about compassion and support and what actually happens to some people.

Debbie1955
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I think *perhaps* Hospice works better for patients without dementia. I feel sure Hospice killed my father, who had been living in the memory unit of an assisted living facility. He declined antibiotic meds for his lung infection once (from an *unfamiliar* nurse, which was typical for him), and the next step in Hospice's view was to start morphine and Ativan to "keep him comfortable". Being heavily medicated, he could no longer eat, drink or be coaxed to take his antibiotics from *familiar* people. He died 3 days later, after a morphine injection. (Before the lung infection, he was mobile and in excellent health for his age.) My elderly mother was too polite and confused herself to question Hospice, whom she thought she could trust. They refused to answer questions her children had about backing off morphine and simply referred to his directive which my mother had agreed to. The Hospice decision to start morphine, once my Dad refused antibiotic meds, was a rigid clinical approach that did not acknowledge the desires of his family---and failed to consider communication and behavior issues related to his dementia. We expected spiritual and emotional direction, but they simply came in with regular doses of meds and were otherwise mostly absent. These weren't my dad's regular caregivers who understood his idiosyncrasies. There was little communication and once Hospice started the drug protocol, it could not be stopped. This was all incredibly upsetting to my 88 yr old mother who feels heavy guilt about how he died.

We'd had previous experience with Hospice several years ago when my dad went through a weight loss period. They told us he was dying and accused us of being in denial. We figured out he wasn't eating enough because of broken teeth, and he was taking so long at meals that facility staff took his plate before he finished. (Another resident told us.) When we started bringing him appropriate food from home, he gained 18 pounds!

Make sure your local Hospice has nurses who are responsive listeners and
are willing to engage the entire family, not just the spouse or health POA. Decide how you will treat simple infections like uti's and pneumonia. Hospice will hasten death rather than treat these--and dementia patients are especially vulnerable.

The spiritual/emotional component to my dad's Hospice care was absent. We mostly saw an eagerness on their part to start the med protocol and "make him comfortable".

Hospice made the decision about when my dad would die and I feel incredibly angry.
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MadGDaughter - I can't speculate about why your grandmother is on hospice care. I CAN tell you that my stepmother walked into hospice house on her own two feet, went through the entire facility introducing herself and getting to know the nurses and other workers, and died 3 weeks later. Nobody who didn't know her struggle intimately would think that seemed reasonable, but that was the nature of her disease, which was cancer.

Some diseases can consume a life that quickly - or, even more quickly, can overwhelm a person with pain and suffering. Cancer was an incredibly painful disease for my stepmom, so she asked for medications, which, yes, made her sleep a great deal, because she preferred that to the terrible and sudden onslaught of pain. (She also begged every one of us to kill her, but in fact, she still died of plain old cancer.)

Ask questions, talk to your relative and find out why your grandmother is on hospice care. I can pretty much guarantee it's not because of mild dementia.

Edit - she can still hear your voice, by the way. Talk to her, sing to her, tell her everything you want her to know, The hearing is one of the last senses to go.
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Mad, when your body is shutting down, you don’t need food or water and food/water won’t keep you alive longer. They should at least be giving your grandma water by using oral swabs I would think. Food on the other hand, if her body is shutting down it doesn’t need food anymore and it can’t digest it. It will only cause her discomfort. Of course you should be asking lots of questions and maybe even get a second opinion on hospice. Hospice doesn’t just come in and medicate you, someone has to consent to it.
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Dear MadGdaughter,

Lets clarify one thing, a medical doctor can order hospice if he believes that the patient is terminal and has less than 6 months to live. (Medicare guidelines).
He also asks the patient or, in your grandmother's case because she has dementia, her medical Power of Attorney, if they WANT hospice services. I would take your concerns to whomever signed her up. That person can explain the terminal diagnosis grandma has and why her POA thought hospice was a good choice.

This is exactly what I have posted before. The POA who makes the decisions SHOULD share all the information with ALL family members involved with the patient to AVOID situations like this.

Please return and let us know what you found out from grandma's POA.

My sympathies to you and your family.
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MadGD, you would need to speak to your relative and ask why hospice was brought in. Whatever the reason given, and whether or not you are satisfied with it, it won't have been because your grandmother has mild dementia.

You are *allowed* to ask questions, and if you are troubled about decisions that have been made then do.

About thirst: dying bodies do not have the same responses as you or I would do, so try not to worry so much about how your grandmother is experiencing this time. I hope your grandmother's team will be able to share more information with you and set your mind at rest. Wishing peace to you and your family.
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I always thought hospice was to help with pain especially with people with terminal illnesses. However, my grandmother has mild Demetia. She was having trouble falling and wasn’t wanting to eat. She’s been living in an assisted living facility. A relative brought in hospice. Next thing I know she went from talking, sitting up and moving last week with poor memory to now comotose. I know there’s morphine and Atavan being used (though I’m told very low dosage). I’m told she’ll be resting now until she passes. She’s not on IV and is getting no nutrition. Of course she’s going to die. Hospice says this is her body shutting down — only because days ago (when she wasn’t shutting down) she wasn’t given nutrition!! This is euthanasia. I’m sitting here watching her and wondering what I can do? I want to say...help her....save her......don’t make her die faster...wake her up...give her a chance!!! This is so upsetting to watch. Yes, I know it’s a prettier death, quieter, my grandmother isn’t scared but this doesn’t feel right. Hospice came in and immediately she was asleep and didn’t wake up again. I feel better writing this. I will NEVER allow this to happen to my parents. I wish I could ask my grandmother what she wants. Does she want to lie there thirsty and shutting down and unaware or wake up and see what would happen. See her families faces again. Hear our voices. This is so wrong. There must be a way to help with pain but not put patients to sleep permanently. Her vital signs are all normal. I truly https://www.agingcare.com/discussions/did-hospice-rush-your-loved-ones-death-162802.htmbelieve she could live - how long I don’t know - but that’s for God to decide not us!!!
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I took care of my cousin Pam thru lung cancer. She was on hospice. At first she was at home, but then asked to go into the hospital hospice. The nurses both at home and at the hospital were wonderful. No one appeared and gave her medication that hadn’t been requested. My brother and I took turns staying with her, plus I had a private duty RN from 7 am - 11pm daily. She died peacefully and comfortable.
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CarlaCB you could be right. If the patient is in a hospice facility perhaps they are over-drugging them. I honestly can’t undeetand how it would benefit hospice to euthanize a patient, to kill them off quicker. We just received the Medicare statements for my MILs 3 months on hospice and the cost is insane! For the month of March, for 5 home health visits from an aide, Medicare paid $5,800! In April, for 13 aids visits, 5 nurse visits and a social work visit, they paid $8,664. May there were 12 aide visits and 9 nurse visits at a cost of $8,942. And the cost of sending a nurse out to pronounce her dead was $288! The nurse wasn’t even there for 5 minutes! Isn’t that crazy? I know health care is expensive but hospice is quite expensive! I don’t know why hospice would want to speed up the process?
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My mother is currently receiving hospice care at home and so far I've been very happy with the service. They are responding to requests for information and symptom relief and they are coming to the house often to check her, bathe and change her, help the family members understand how to keep Mom comfortable and avoid problems such as pressure sores, lung congestion, and pain. My only issue is that I wish hospice would bring the meds with them instead of sending prescriptions to Mom's pharmacy (which is 7-8 miles away in the next town) where someone has to leave Mom to go pick them up. I guess that's not part of their practice, though. Having said that, they have prescribed everything I've asked for - for pain, nausea, any symptom I report. I am happy and grateful to have them. That said, it only works if there are family members willing to be involved full time and doing a lot of work taking care of the patient and coordinating with hospice.

Maybe the problems with over-medication of hospice patients are occurring in a facility setting where they can't proved 1-1 care 24 hours a day? I can see them wanting the patient to sleep more because the waking hours for very sick patients are hellishly difficult in the attempt to keep the person comfortable. Just speculating; we haven't had the issue of my mother being drugged at all.
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SueC1957:

I think you offered excellent advice.

However, many people do not have children or living family members who can be their advocate.

Many people who are caring for an ailing spouse are ill themselves and when someone is ill it is very difficult to navigate the very complicated medical system.

You are apparently a good person, but not all hospice workers are.
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SueC, what a blessing you must have been to your patients and their families. If I don't go out quickly in a freak espresso machine accident or something, I hope I have a kindly nurse like you checking in on me at the end.
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Greeneyes (and others),
I am truly sorry for your negative hospice experience(s). It's not SUPPOSED to be that way.

I was a hospice nurse up until March of this year. (I didn't want to work 2 jobs.) Maybe it was that I worked for a great company, maybe my patients liked my style of nursing, maybe the families had previous experience with loved ones dying 'without' hospice and were grateful to have us. I don't know. But I never had ONE complaint from any of the patients or family members that I took care of.

MY job was 8 hour shifts in the patients home for emergency symptom relief (vomiting, pain, etc.) or respite care for the family when they were at a breaking point. Maybe that had something to do with how they perceived hospice. Often times I was the nurse at the patients last moments. To most family members, having a sleeping loved one passing on to the next realm is better than having an agitated, gasping, pain-riddled loved one departing in agony. Hence, the use of drugs to accomplish "being comfortable". They are to be used when needed. It's difficult to accomplish pain relief without having the patient fall asleep. When YOU take a narcotic pain pill I'll bet you get sleepy. That's the side effect of relieving pain.

I have since learned that all hospice companies are NOT the same. If you aren't happy with your company, talk it over with the director of nurses. If still not satisfied, CHANGE companies. Just because this is a free service covered by Medicare, doesn't mean you have to stay with the company that's been chosen. You can move from company to company.

What I found was most family members aren't "absorbing" ALL the information that is given them on the first visit. Often, they don't consult the booklet or binder with information that's left in the home either as to what the policies and procedures are. They don't call the office to ask questions. So they really have no clue as to how the system works. I understand they are grieving or in shock but someone should take the lead to understand what the game plan is. I know it's a lot to take in but do your homework. You would read the contract if you signed up with a gym, right? 

I also got a lot of family and friends, who hadn't seen the dying person in a long time, come in madder than h*ll that the situation was like it was.
Please have a designated family member communicate with ALL people involved with the loved one so no one is flabbergasted at the situation. I've seen fights at the dying patients bedside and family members not knowing that the loved one was near death.

You also have the right to refuse meds (if your loved one can't say or they signal they don't want them.) There are usually "standard orders" for medication administration BUT that can change if it's not in the best judgment for the patient. Talk to the nurse, who will talk to the doctor, and the orders will be changed. I've done this.

Hospice nurses are there to make the transition from this life to the next as smooth as possible. Unfortunately things don't always go without a snag. Pick a family member who will be physically near the loved one most of the time, to be their advocate. If you don't like what's happening, SAY something. Don't wait until it's too late then say this "happened" to us. With your input, your loved ones departing will happen the way the dying person (and their family) want it to be.
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I will start off first by stating very clearly... Bravo to ANY Hospice providers who TRULY put care and staying alive at number 1. BUT.... I will state very clearly and STRONGLY.... My experience with Hospice was the worst experience I could have imagined, next to the WORST hospital experience of my lifetime. I HAD such a strong respect for many in the medical profession up until this last month of my life, and tragically the end of my husband life. I had my eyes ripped wide open to the possible reality of when a hospital doctor, (who I might add never knew my husband or myself) had for whatever her true reason had decided to make my husbands mental health her issue and PUSH her nasty agenda onto my husbands tweaking body ... Deciding that it was his TIME to wrap up his medical journey and (probably) cut hospital loses. I have never in my 58 years witnessed such a misuse of power as this past June of 2018 in the University of Washington's medical center hospital!!
Sadly after our hastened departure dropping us in a hot small apartment with no medical equipment and NONE of the proper pain control medications we then had the misfortune of being handed over to Fransican Hospice. The next 7 and 1/2 days was beyond anything I was prepared for. The lack of true compassion was shocking. Let me rephrase that... They had a lot of compassion for my husband being "dead" but none for helping him stay alive. I am interested in seeing if my post is seen, as I have learned that many have that "big brother" mentality and someone tends to be behind to clean up the messes left by those..... less caring shall I say.
Heart braking in today's world to again see that no one surpasses the bottom line $$$
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My sister basically bled to death at HOME!!!!! She was throwing up blood all night, Hospice came the next day and gave her a suppository ??????????? and left her!! They never came back to check on her, even after begging and pleading from her daughter for some help with symptom control. My sister was freaking and scared to death! It took until that night to get Hospice to allow her to be taken by ambulance (even though they would not help) She was comatose by that time and had lost 80% of her blood volume! She died the next morning in a nasty HOSPITAL emergency room bed!!!! NOT in the inpatient hospice comfortable bed surrounded by loving family that she was promised!!! I am LIVID, HURT, and will NOT shut up about this!!! She deserved better!! They have not once called my 19 year old niece who was her main caregiver, who had to watch her Mom basically bleed to death in their home!!! and she died 2 weeks ago!!! As a matter of fact, they have even ignored calls to come pick up their equipment!! They did not drug her to death, but definitely did not give her any relief at all of these horrible symptoms and did not help make it any easier on my niece or get her in to inpatient hospice as the Hospice director promised my sister that day in the hospital in my presence!! This was NOT a peaceful death by far!! Up until this, all my experiences with Hospice had been wonderful. I assured my sister this was the right choice. Now I also live with that regret, along with tons of others concerning her death. I will NEVER recommend Hospice to another soul :-(
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