Did Hospice rush your loved ones death?

I am a hospice physician. I would like to say that you are not eligible for hospice services unless you have a prognosis of less then 6 months. We consider the patient and the patient's family as the unit of care. We provide the a nurse, nurse's aide, chaplain or spiritual counselor, social worker and a physician to each patient and their families. We provide 24 hours day, 7 day a week access to care through a phone number you can call and any of the previously mentioned providers can be called to come out and see the patient or the family. We also provide 13 months of bereavement care for the family. Hospice comes to wherever the patient is located nursing home, home, personal care home, or assisted living centers. We are an extra layer of care. A RN nurse is assigned to visit the patient at least once a week and then a LVN nurse usually comes a second time in the week (At least in our hospice). Then a home health aide is assigned to come out and bathe a patient at least twice a week. Most want at least 3 times a week. If the patient is having a hard time they can receive a RN or LVN visit daily especially in the last few days of life. Also there is a free to the family 5 days of respite care for putting stable at home patients in a nursing home for five days of rest so family members can rest. The there is continuous care for uncontrolled symptom management and in patient hospice care for symptoms that can not be managed by in home continuous care. The last two mentioned are for very specific symptom management and it is highly regulated by Medicare. It is not to be used for normal end of life care. You also get a social worker to help you with end of life care from anxiety in family and patient to planning a funeral or placement in a nursing home. They make an initial visit and then as needed visits. The spiritual care worker helps patients and families deal with spiritual issues around the end of life. They meet you where you are and can sit and pray with the patient and his family or coordinate spiritual care with your chosen faith. They visit initially and then as needed and you can refuse their visit. All medications related to the primary hospice diagnosis are covered by the hospice as well as medications related to pain, constipation, nausea & vomiting, anxiety & agitation. Most people who are in the last 6 months do experience pain and so yes we are aggressive at managing pain because it is not fair to die in pain even if you can not verbalize that you are in pain. The elderly often express pain in worsening delirium which means they see, hear and react to things other people can not see, hear and react to. As you age all your organs age including your stomach and your ability to metabolize medications in your stomach decreases. So giving your loved one more medications actually makes the patients stomach work harder at digesting them. So this means that a lot of the drugs and vitamins actually are not getting metabolized and are diminishing the amount of any of the drugs that are getting into the patients blood supply. It has been shown with study after study that the elderly medically fragile (anybody in a nursing home and almost anyone who is older then 65 depending on the person) need to be on less then 9 medications and that means over the counter medications and vitamins too. And most people in the last 6 months of life have lost enough weight that they no longer have hypertension and diabetes type II and therefore either need less of those medications and/or no longer need those medications. Most people who initially come on hospice have a "honeymoon period" when we stop excessive medications and the patient actually wakes up and is more cognizant and aware of there surroundings. We do not start pain medications unless there is some symptoms or source of pain. Most people in the last few weeks of life have pain as their body start to shut down and their muscles contract. We do not want you loved one to die. We just want to make sure your loved one is actually cared for appropriately. If you do not want to believe that I will talk about the economics of hospice. We actually do not want to kill your loved one because that would mean we can no longer be reimbursed for their care. (Medicare pays a set amount for every day you are on hospice. It covers the pay of all the caregivers, the director of nursing, the administrator, the pharmacy costs, the secretaries, the answering service, the physician etc. ) We have patients with varying length of stays some come on and die with in a day others come on and die 3 years later. Our hospice (Silverado Hospice) has a physician visit the patient with in 7 days of admission, to make sure the patient is appropriate and indeed has a life expectancy of less then 6 months if the disease was to run it's normal course. (This visit is not required by healthcare law) After the first 6 months patients are seen by a physician ever 2 months to re-certify that the patient's has a life expectancy of less then 6 months is the disease was to run it's normal course. (these visits are required by law) If the patient's illness has stabilized then the patient is discharged from hospice for extended prognosis. (life expectancy greater then 6 months) Our hospice location in and it has a census of about 150-160 patients with about 50 admissions per month and 50 deaths per month. We usually have 3-4 patients that we discharge per month for extended prognosis. We are happy to readmit them when their illness progresses again and that happens quite a bit, usually 3-12 months later. Medicare has strict guidelines that must be followed so the patient has to show decline each re-certification period (within each 60 day period). So that is what hospice actually does. We do not hasten death in anyway.

THANK YOU, HospiceMD!
A few of us hospice nurses have been barely keeping our heads above water on this thread.
We appreciate you setting everyone straight.
All any of us want to do is keep your terminal loved one comfortable. Make sure everyone in your family reads the contract and knows what to expect and what services are offered. Then everyone is on the same page.

To Hospice MD, I wish my mom's hospice experience had been what you described. It was nothing like it, but my mom was only in hospice less than a day because she passed within hours of in hospital "hospice" due to being put on morphine and drip. My mom had suspected CJD which was confirmed with brain autopsy. Until one month before the initial symptoms of slight dementia, she was a perfectly healthy woman. There was no pain, mom was in a coma state as most CJD patients end up, and her vital signs were fine. Why the hospital hospice doctor put her on morphine we will never know and haunts me to this day. I told him I did not like that idea and he told me it would not hurt her but if anything it would help with any breathing issues which there were none. There is NO doubt the use of morphine in this case ended her life in 4 hours time. I have yet to confront this doctor to ask him why he did it. CJD is a terminal rare disease for which there is no cure or specific treatment. It runs its course and most people die within a year, my mom only had one month of symptoms and was already comatose, but only God knows how long she had to live. The hospice doctor in this case played God and that is not acceptable. My dad is 88 and healthy and I will never allow this to happen again. It is sad and awful that I had to learn in this way what morphine can do when it is used needlessly or inappropriately. I realize morphine is good for those in pain and suffering at the end of life, but to administer it when there is no pain or agony should be punishable by law. This leads me to think that if you are old with a terminal disease the doctor can decide if you live another day or not. While that is not everyone's experience, it was definitely my family's.

Just to be clear, mom was only comatose for about ten days when given the morphine drip.  CJD attacks the healthy brain cells and converts them to what is known as prion disease. She had been in and out of hospitals for a month doing tests to find what was going on. CJD baffles doctors because it is a one in a million disease which has no specific way of diagnosing, so it's very difficult on all and only positive diagnosis and confirmation is thru autopsy. 

Flymom, I'm so sorry for the loss of your mom to this truly terrible disease. Many CJD patients do not live long after lapsing into coma. I know that you believe that the morphine killed your mom, but I highly doubt it. I've just been through the hospice experience with my own mom.

If we had accepted hospice when it was first recommended, more than two years ago, our experience would have been like the one Hospice MD describes. Because other famiky members waited until mom was critical and already actively dying, our hospice experience was about 36 hours long.

Again, my deep sympathies to you. I hope you find peace.

From The Mayo Clinic;
Creutzfeldt-Jakob Disease, also called: CJD or subacute spongiform encephalopathy is
a degenerative brain disorder that leads to dementia and death. Treatment can help, but this condition can't be cured. It requires a medical diagnosis with lab tests. Imaging is always required.
Chronic: can last for years or be lifelong.
Creutzfeldt-Jakob Disease may occur spontaneously, be inherited or be transmitted by contact with infected tissue, such as during a transplant or from eating contaminated meat.
The condition causes personality changes, anxiety, depression and memory loss, usually within a few months. Many people lapse into coma.
Because no effective treatment exists, the focus is on alleviating pain and relieving symptoms. Consult a doctor for medical advice.
Sources: Mayo Clinic and others.

Dear Flymom,
I am so very sorry for the loss of your beloved Mom. But please be kind enough to read the following.
I know what it "looks" like... the Morphine was hooked up, then she died. But she would have died at that time, with or without the Morphine.
To those who may not know, a "drip" is a needle in the vein (IV) with a saline solution mixed with pain medication, hooked up to a machine that delivers a continuous, set amount of medication over a prescribed period of time. Doctors can NOT order deadly amounts to be given. It just can't happen. Pharmacists make the bag of Morphine in the pharmacy and the nurse usually hooks it up to the patient. Doctor's just order it. No nurse that I've EVER encountered in my 38 years would give an overdose of IV pain medicine. IT IS ILLEGAL! The patient is kept comfortable with the amount the doctor believes is sufficient for pain relief but not enough to overwhelm the patient and stop breathing.

How do you KNOW that your mom had no pain in her coma? Just because her vitals were fine doesn't mean that she was as comfortable as she could be. As mentioned before on this thread, there are many 'unspoken' signs of pain that the average person might miss.
You have admitted that your mom was terminal with, unfortunately, no hope of recovery. Your mom had been in a coma for 10 days. During that time I know she was assessed neurologically (for pain too) by the doctors. The decision was made to keep her comfortable. Could you imagine being trapped in your body and not being able to let anyone know that you hurt?
According to the famous Mayo clinic, "the focus is on alleviating pain". I know you wouldn't want your mother to suffer, especially being unable to speak.

It's hard to let go. Death happens too fast for us to wrap our brains around it. Most of us are in denial. "But she was just fine a month ago." It's all too fast and way too painful to let go. And it's so final.
It's easy to say that Morphine killed her so we can blame it on 'something' and be mad at it to displace our helplessness to fix the problem.

I believe that, as time passes, you will come to see that the day God set aside for her to be with Him WAS the day she passed. Be comforted that she passed with no pain, whether you could see it or not.

Sue C I did have one patient with CJD and everything went as your quote from the Mayo Clinic described. Unfortunately his brother was also in the early stages too

Flymom I know you are hurting and nothing anyone can add will relieve that pain. But try and find peace within from the fact that Mom was actively dying when hospice came in and gave the morphine and IV but focus on the fact that she was able to die peacefully

Yes I do feel that way. Once we they upped our dads morphine and his Ativan he was u responsive and died in 2 days. I do think giving them morphine kills them faster. I feel this way because they aren't eating or drinking and I feel our dads body shut down quicker. It's very sad. Same thing happened with my mom also. My mom died 2 years ago from ALS and my dad just died 2 weeks ago from lung cancer.

Dear Danielle. I am so sorry for the loss of both parents in such a short period of time.
Naturally you are entitled to your opinion about hospice but the fact is both parets had very unpleasant life threatening diseases and hospice was able to ease their distress even if the passed sooner than you expected. Feeding your Dad would have been fruitless as it would have put more stress on his failing organs and lead to more distress for him. Would you really have wanted to watch either of them moaning with pain, restless and anxious in the final days of their lives. I think you would have been calling hospice and asking them to help him
Try and put this behind you and concentrate on the good times you had with your parents. Hospice has a grief group run by a social worker and you might find it helpful to share your feelings with others.

Danielle, sorry for the loss of your parents, and the recent loss of your father.

I currently have my FIL home with us and on Hospice. He has Lung Cancer and his Cancer was found by one of the many tests he had, when he was admitted to hospital for Severe Pneumonia and Sepsis.

He was so gravely ill at the time, I honestly didn't think that he would survive it, but he sure did, however in the many tests that were done on him, a Chest CT confirmed a golf ball sized mass is growing in his Right Lung, and it has already spread to his diaphram and his rib bones.

This is a guy who Never complains of pain, but then does things like slide away from that side of his body in bed, which the Nurses called guarding. When pressed on that side, he says does hurt, so he now gets pain meds routinely which do not "knock him out", but only makes him more relaxed and comfortable.

We've had him home with us now 6 weeks. The Cancer Dr in hospital told us that he would probably only make it 3 weeks if that, and he has exceed that guestimate.

The first week home was Rough, as FIL was still recovering from the Pneumonia, coughing up gobs of terrible thick phlegm, but he rallied, and got much better, nearly back to his old self, but is so extremely weak, that he is now bedbound. He is also now double incontinent, and on a catheter, with round the clock Oxycodone and Lorazepam.

Things went along pretty normally, except for him being bed bound, and getting his medications adjusted just right, until about 10 days ago, when he started getting major agitation and having delusions,  and talking 
non-sensical (?).  

It was frightening, not knowing exactly what to do, but we have an Amazing Hospice team working for us,  just a phone call away, day or night,  and they have worked hard to adjust his medications just right. Our Nurse comes twice a week to check on him as well as calls in frequently, we have a bath aide 2 X per week, and really great SW, who is helping me to get in VA home care services started, as well as Our Lovely Lady Chaplain, who sees him each week, to visit, and she also sings and players her flute.

My FIL just Loves all "his ladies", with a couple of Handsome male Nurses thrown in for my pleasure,  Lol! No, they really really great too!

In the last 10 days with this new symptom of Agitation, there have been several medication adjustments, now Morphine and Haldol, to quiet him, and relieve his stress, which has helped immensely, allowing him And Us to get the much needed sleep at night, because doing Hospice care at home is not easy, it's a lot of work! I swear our Hospice team is here to help us, almost as much as they are to help him the patient!

It is all about the comfort care now, my FIL knows that he is Dying, and we are doing everything we can to make his transition as calm, comfortable and loving as possible.

Recent trouble with a Urinary tract infection has raised havoc with his catheter, which has needed to be changed 3 times in the past week, it's really frustrating, but he is in no noticeable pain, and that is our goal. Yes, he is sleeping more, but he isn't struggling to get out of bed, wrestling with his clothing and blankets, talking gibberish, and so confused as he was without the added medications, and even he feels better, and understands that this is nessesary for him and for my husband and myself, in order to keep him here with us, rather than being sent to the Hospice Hospital, or a Nursing home, as he would just hate that.

As long as we can keep him comfortable, keep him here with us, that is our goal, and with the help of Our Hospice Team, I am praying that we can continue to have him here as is his dying wish.

There is no perfect solution, we just do our best, and that is all we can do.

It is most likely that he will pass from an infection, rather than the Cancer, which will be a blessing, as if this type of Cancer progresses, it could spread to his brain (if it hasn't already), and will eventually cause trouble with his breathing, his lungs filling with fluid, coughing, and cause much more pain as the cancer advances, and time goes on.

I tend to be much more honest and frank with him than my husband is, but I have worked in Healthcare all my life, and have been through the dying process with both of my parents, dying of horrible disease processes, which I wouldn't wish on my worst enemy.

I believe it's much nicer when the patient knows and understands what is in store for their life, and how we can make things as easy as possible for them, even if that means that they are sleepy or asleep for much of the day, but Never have our Hospice team suggested doses high enough to harm him, but only enough to ease his symptoms.

I know it's scary and so Sad to lose our Loved ones, especially our Mom's and Dad's, as I've lost both, and was right there with them as they took their last breaths. I can see where one might wish to blame the Hospice Dr or Nurse, but this is my 2nd time around utilizing the wonderful services of Hospice, and I know that we could never do this without them. It would be horrible to even try! We would be way over our heads, and out Loved Ones would be in a Nursing home, unhappy, and not have us here advocating for them 24/7.

We are all going to die, but Please Dear God, let me have the excellent care of a Hospice team like ours, working with my family and on my side!

I am so sorry for those of you who have lost a parent on Hospice. But please know that they do everything they can to make their patients lives and the lives of the caregivers, as easy and comfortable as possible. It is Sad, and the grief can eat you up, so do take the Hospice team up on the. Grief counseling that they offer. I have yet to do this in the past, but may do so for myself this time around, as I don't feel like I've ever grieved properly, as we lost 3 parents so closely together, and then immediately began caring for my FIL in our home for many years now.

It will be nice to understand how I buried my grief, my feelings for many years now. I'm sure that I could benifit from Grief Counseling for sure! God bless all of you who are suffering from loss!

Stacey thank you for sharing your innermost feelings about your journey with hospice. That is the way it is supposed to happen.
I wish you and FIL peace in his final days and a death that will be a joyful event as he passes into the care of our Lord. Bless you for sharing.

Oh, Stacy, you said that so well!

OK so I lied! He is still struggling to get out of bed, Grrr, this situation is changing day by day,  and sometimes hour by hour!

 In these past few days,  the agitation and delusions are coming and going, and sometimes the meds work, and sometimes they don't!  My FIL'S symptoms tend to come on late in the day and evening,  so I'm not sure what is infection related or what could be some Sundowners symptoms,  or what might even be medication reactions,  it's so frustrating,  but even so, our Hospice Nurse has given us pretty flexible medication dosing, and feels that we know what works best (especially with my background in medicine), and she trusts our judgement.  It helps that she knows that we tend to error on the side of caution,  and don't or haven't yet given him the maximum allowable dosage possible but, but one more night like last night, and we may be there NOW! 

YOWZA, my FIL was up awake about 6 times between 7pm and 3pm, calling out, confused, talking gibberish,  trying to get out of his bed and his tee-shirt,  and I do believe it is the infection causing the majority of the problems.  Interestingly,  he slept in until nearly 1pm today,  which was frustrating,  as hubby and I kept checking in on him all night, and neither of us slept much. I just wish we knew he was going to sleep so late, as then we would have slept in too! We both try to get up fairly early,  say 7am, so we can get ourselves ready for the day, so we are both pretty tired today,  with these type of symptoms going on the past 7 or so nights now. 

Hubby keeps thinking that the end is near,  ("meredays"), while I don't necessarily believe that myself,  as I've been through this before with my own parents.  

And while hubby doesn't wish for his Dad to die per se, the long goodbye does tend to wear you down, knowing that as the days go on, the symptoms could get worse,   and you are constantly worried that he is suffering, and it is just making it that much more difficult to everyone concerned.  Let's face it, his QOL is pretty nominal at this point. 

Then again,  when he did wake up, he had coffee and mini Kit Kat Chocolate bars, then ate a fair sized lunch, so we could yet be at this awhile longer! 

I'm the type of person who "needs to know", and when I do my research online,  I find that I am not that different from many other people who are doing Hospice Care, but I am finding that there isn't any rhyme nor reason,  as to how long this takes, or the winding path it takes to get there. 

Some people lose there LO really fast and sometimes faster then they even had a chance to prepare themselves or say their goodbyes, and some LO's linger on for a long time, sometimes fooling you into thinking that they are almost gone, only to rally once more. My FIL is a rally once more kind of guy, Lol! PROSTATE CANCER,  LYMPHOMA,  A HEART ATTACK,  and now LUNG CANCER, this guy has nine lives! 

That's OK, as long as he isn't suffering is all I care about!   Life is very Mysterious!  

Stacey,
Oh, I so relate. The night time IS the worst! I feel like I'm back with my newborn. At least with the baby, I could turn on the baby monitor and leave the room and all was well. Not so here!
I boxed up the baby monitor I bought for checking up on mom, as she needs a constant pair of eyes on her (24/7). We put a twin bed in her room for whichever caregiver's turn it is (my husband, the overnight caregiver or me) to sleep on.
We attached Christmas bells to the bottom part of her bed sheet with pinching paper clips. Works great! If she moves at all, we hear it immediately. We all sleep with one eye open but, fortunately, I get a break 4 nights a week from 10 pm to 7 am.

Mom loves to take off her pajama bottoms and diapers. Even with very careful watching, she seems to wiggle out of them. Then, of course, urine everywhere. I am awaiting the Amazon order of adult bibs and "onesies" for incontinent adults. For now, we have to tape her pj bottoms to the pj tops. We tell her we're wrapping her up as a Christmas present. She is not pleased.

I'm also going to check out bed rails that you slip under the mattress and I have adjusted her meds for maximum relaxation at bedtime. She seems to do the sundowner's thing, perfectly asleep on the couch after dinner but , OMG, move her 10 ft. to her bedroom at bedtime and it's "craaaaaazy time"!

The other day I went into our bedroom to tell my husband something. I was in there 3 minutes. She somehow got off the couch and wound up in the bathroom with her pants and diapers around her ankles, peeing all over the floor!!!!!! :(

Regarding my elder years, dying in my sleep, just when I start to decline to the point of needing help, would be the best. I'll settle for a massive heart attack (that takes me out) too. But, God forbid, this!

My dad had a saying, "I want to die at the hand of a jealous husband at 82!" Should we all have it so good, Dad. ;)

I firmly believe that all those meds from Hospice killed my mother. Yes I know about pancreatic cancer and she had cancer spread to several areas but she went from coherent and upset she had cancer to delusional and unresponsive and was dead in 50 days from diagnosis. I hate myself for ever letting them into our home. We were OK until they got here. We should have handled everything with the hospital, but hospice tells the patient you don't need to go to anymore doctors. After she died they kept calling and calling wanting to counsel me in my grief, I had them remove me from their calling list and then got a bill from the state for $25000.00 for 48 days of care which I did all of it round the clock with no help. I am still so upset.

The topic starting post is exactly how I feel, and practically word for word what happened with my father, he was still managing to live at home, with care visits during the day, and was offered a week in a hospice for a rest. once there he perked up quite a bit, then I was asked if it would be ok to change his medication, and it might make him a bit sleepy, we all discussed it, including with my father, and agreed, my sisters and I went and walked around the gardens in the hospice - when we returned my father had been given his new meds, and was asleep, he never came round or woke up; I felt like they were starving him to death - and did raise my concerns with the Dr. within 3 days he was gone. I often feel guilty as it was my decision to move him to a hospice, I talked him into it even though he felt he'd never return, i genuinely thought it would just be for a "rest for the week" as had been discribed to me. I also made the decision at my sisters requests to change his meds; as per Dr's advice.

However - he had late stages of throat cancer (he smoked from 14-68) his prognosis wasn't good; he went from being "reasonably OK" to no longer being here or in pain. We had lost our mother 9 months before due to an 'issue' during a hip replacement op and he had understandably given up. All the staff in the hospice were amazing, patient, friendly, caring, I will never know the strength they must have to do that job day in and day out.

Had we not gone down this route, what may have happened to him could of been much worse with a lot more pain and suffering. We will never know x

I know what happened and you are right. They hastened and murdered your Father. They did that to my Step Father also. He was dying of cancer but we kept him at home and my Mother, an RN and at that time I was finishing my RN degree, were assisting him. He ate daily. He went to the bathroom up with assist. He could think clearly. He spoke coherently and he slept at night and some during the day. He knew all of his family and friends. However due to his 24 hour around the clock nursing duty as he was Belfast and had oxygen on nasal canalla and adjusting his many pillows it had worn my 64 year old Mother out. And I was very busy finishing my nursing school. So on Friday evening early his O2 says dropped to below 88. We had no ability to give him anymore as our machine was already on high. So we took him by ambulance to the ER and he had been on hospice for just two weeks. They admitted him to the Hospice unit. They gave him 3 liters of 02 and he was awake and his 02 SARS hit 92 to 94 percent which is good. He knew us and he said he was fine. I went home and my Mother stayed for two more hours and then left for home. She was so tired. She slept well and lol and behold at 11am the next morning we got a call from the hospice doctor stating his respiratory system was shutting down slowly and his 02 days were below 90. He was unresponsive. Mom and I called other family and got dressed and closed up the house and drove the 1/2 hour drive to the hospital. It was late afternoon by then. We arrived and found his respirations 12. Not good. Then 2 hours later 10. He would not awaken. We tried. Mom asked the Hospice nurse what they gave him regarding medications? We had specifically informed them previously that he could not take Ativan with morphine! Well they gave him Ativan IV 1 mg and morphine 4 mg IV q 4 hours which was an increase from the 15 mgs we were giving him at home! My Mother and I were perplexed. But it was too late. He was beginning the dying process and within two more hours he was dead. He specifically stated the day before that he did not want to die! We knew something was wrong. We knew he had been drugged to die. And we felt bad about that. It still bothers my Mother to this day! Now I know hospice as an RN well today as that was 20 years ago when he died. I know medical well. I have seen many die before their time in hospice. They murder them. And you won't ever get me to change my mind! 3 other people I have known very well since that time stated the same things happened to their loved ones. Hospice is not necessary. Nurses can easily take care of terminally ill patients in the hospital daily and indeed we do all the time! Many people hate hospice. They know. So for those who think it's humane you are sorely mistaken. Again don't even attempt to argue with me. My mind is dogmatic about this. Mark.

You are right. Hospice kills. I know because I am an RN. I saw it done years ago when I was finishing my nursing. I have worked almost 20 years and many will tell you similar stories about how their loved one was fine and alert and orientation x3 and then after a hospice admission days later they are dead. They Love hastening death with morphine and Ativan and other cocktail drugs. They are a cult. That happened to my step Father 20 years ago. My Mother can inform also and she is a retired RN from the good ole days. We do not believe in hospice. It's a big money making sick scheme. And we are both dogmatic about this. Stay away!

I don't know why I bother to keep posting on this thread it makes me so angry. I do it because I want to prevent others from refusing to use this wonderful organization when their loved ones need it the most.

Of course there are bad apples in every basket and this primarily applies to some for profit hospices.

Why kill the hand that feeds you? A hospice ceases to exist if they don't have patients. The more they have and the longer they stay makes the income increase. A three day patient costs more than a six month one because of the heavy investment in having to provide equipment for a new patient and the use of staff which increases at the end of life.
Your mother may be a retired R N from the good old days but I started nursing in the 50s and only retired ten years ago and I can vouch for the fact that it was not better in the good 'ol days. Geriatric patients were housed in big open wards with 24 other patients. All they had was their bed and clothes pulled out of the communal pile each morning which may have sort of fitted. No TV and no phone (just a portable pay phone that could be wheeled from bed to bed)
No sitting in unchanged Depends, they had not been invented. They were sat on a 12" X 12" gauze and brown wool pad made every night by the night nurse. the only thing that may have been better is that in addition to the standard three meals a day they also had morning tea (at 5 am) mid morning coffee and a late night hot drink.

Did your mother work under those conditions?

Do you even believe what I am writing?

This was the state of affairs at a major London, UK teaching hospital in the late 50's The unit I worked in was the location of the Dicken's work house with the graveyard right outside the windows.

I finshed my career 10 years ago working as a hospice nurse at a not for profit US hospice. I don't need to tell you how I would wish to be treated. Thank goodness there is little restriction on the use of medications in modern day hospice.
If there is pain and anxiety it is treated (not forced) and often large doses may be required to help the patient and a side effect is frequently drowsiness but that is common close to the end of life.
What ever your views it is not mandatory to use hospice so bear that in mind. if you don't agree with the philosophy stay away that is your right. I was working in London when Dame Cecily Saunders started the modern hospice movement although it had existed in one form or another for centuries. Think of the work Mother Theresa was doing in our own life time.

As far as modern day nurses treating dying patients my personal experience has been every effort is made toil elderly patients. I was admitted to a US teaching hospital with acute appendicitis and the surgeon decided to try treating with IV antibiotics. By the next morningI was in septic shock and my appendix had burst. From there on in I was not fed for ten days and massive amounts of IV normal saline pushed me into heart failure which they ignored for 2 days. Eventually it was noticed that i was severely malnourished and i was offered an NG tube which i refused. They then started TPN and a few days later put in an GJ tube .
Six weeks later I was discharged still in heart failure with fluid in the base of both lungs and a clot in my right ventricular appendage. One of the residents admitted she did not expect me to make it.

I was lucky in that I had an advocate in my husband a retired MD..
I was readmitted to another hospital two days later and after two more weeks was fit to be discharged again.

Would I have preferred hospice of course not but that is just to illustrate what can happen when regular nurses are taking care of you in a hospital. Not that i am blaming the nurses there is so much protocol that has to be followed these dys that they are prevented from making rational decisions.

May I ask why you are contributing to this thread?

Hospice is a wonderful thing for pain management in the end stages of dying. They provide a wonderful support system to the family before and after the death of the loved one.

But with any business - there are good and bad ones out there  - and this includes Hospice businesses.

My mother now qualifies - and did qualify for Hospice - four years ago - under the diagnosis of Dementia. She has Vascular Dementia, actually. The reason why I haven't put her on Hospice is she's not experiencing pain as she's holding steady and not in a rapid decline yet. Also, I want options for in-home bloodwork and in-home x-rays for monitoring which I can't get on Hospice. I'm not aggressive on the bloodwork because Mom is a difficult poke; she gets full labs every six months to one year, just like I do with my PCP. Mom is a DNR so I have absolutely no intention of - any aggressive care. She has no quality of life. I've been waiting for something to take her - quickly. Her Old World genetics just keeps her body going!

As many of know, Dementia can go on for years, obviously, the gift that keeps giving, so whenever I read of patients on hospice - for several years - this is a major red flag to me - but it's a flag that I can live with. Hospice is a big-time money maker according to my mother's now doctor so of course providers are happy to readmit a patient if a patient qualifies. He stated years ago Medicare would give Hospice just one lump sum, like 20 to 30K, for the patient and no more and Hospice decides how much to use - of course stretching out the dollars as much as possible - because Medicare didn't require (and still doesn't) the leftover money returned to them after the patient dies. Now, Medicare is paying out daily, like $140 to $160/per day and continues to pay as long as there is a qualifying diagnosis. How does Hospice stay in business if everyone really does die within six months? I understand the business side of signing up patients who "qualify" for Hospice and readmitting these patients who continue to "qualify" to keep the Hospice business alive. Just imagine if there was no such thing as a Hospice service, then how would our loved ones get the services they need, particularly pain management, in the end stages of life? No one wants to see their loved one suffer. At this point, nearly all of these patients are physically unable go to their doctor for pain relief and PCPs don't prescribe morphine. I don't want to suffer in my end of life stage - load me up on the morphine - please! Also, many of us want our loved ones dying in their home, so Hospice provides this option for us. I don't want my mother dying in a hospital. I want her last memory to be of me and our pets at her side - in the comfort of our home. She feels safe in our home and this where she will die.

I'm fully aware of the money-driven side of our healthcare system - but this also gives us choices in options for care.

OK Mark, I would like to go over your comments, nurse to nurse.

Your words; "They did that (hastened and murdered) to my Step Father also. He was dying of cancer..."
How did anyone kill him if he was dying of cancer. Cancer is frequently metastatic and can be painful. You can't recover while actively dying. Should he have been denied medication?

Have you, in your 19 years of nursing, ever seen a drastic or dramatic change in an otherwise stable but terminal patient from one day to the next?
In my 39 years of nursing, I have witnessed this over and over. It's actually hard to believe, when you leave them at the end of your shift in a stable state and, by your next shift, they are actively dying or have died. Maybe you've never witnessed this. Death has no timetable.

I'm not sure you've got a handle on the math here.
"Well they gave him Ativan IV 1 mg and morphine 4 mg IV q (every) 4 hours which was an increase from the 15 mgs we were giving him at home!"
Help me out. Four mg. of Morphine is MORE than the 15 mg. you were giving him? Maybe you meant to say that it was IV, which lowers the amount of Morphine needed because it goes directly into the vein.
Check this table of narcotic conversion out;
http://openanesthesia.wpengine.com/wp-content/uploads/2015/03/IV-to-po-opioids-–-Equivalency-table.png
Basically it says that it is a 1:3 ratio for Morphine. If you're taking 10 mg. of Morphine IV, then you would take 30 mg. orally. If he got 4 mg. IV, then, (at a 1:3 ratio), his dose at home would have been 12mg. not 15 mg. You were giving him more at home than the IV equivalent he received through hospice. Also, please factor in that these patients may have been taking narcotics for a while and are not "opiate naive". They can tolerate larger doses because they have built up a tolerance.

Also, since you and your mom were RN's, you should know that you can refuse any medicine that you don't want given. Neither of the medications that were given were in lethal doses. There is a "protocol" in hospice for agitation (Ativan), which is very common near the end of life, and also for pain (Morphine).

"I have seen many die before their time in hospice."
Excuse me, but NONE of us know WHEN our last breath will be. You have overstepped your bounds as a nurse, to predict the time of death. The best a seasoned nurse can do is give a guesstimate. Only God knows the day and time.

"Nurses can easily take care of terminally ill patients in the hospital daily and indeed we do all the time!"
Yup and WHAT do we do for them in the hospital, Mark? We give them pain medication and, if they are anxious or restless, we give them anti-anxiety medication. I don't see the difference in medication administration. Same stuff but the hospice patient can be in the comfort of their own home. If you'd rather keep your loved one in pain and agitation, go ahead. Just don't gripe about how difficult it is to care for them and how exhausting it is. Think how exhausted the patient must be without the relief of meds.

"Again don't even attempt to argue with me."
I'm not arguing with you. You are entitled to your opinion, as I am to mine. Have you ever worked for a hospice? Having been a hospice nurse for the last part of my career, I can tell you that I have never murdered anyone. I have relieved obvious pain and thereby made the patient more comfortable. (Isn't that why we became nurses?) I've medicated patients who seemed agitated, being very near the end and they were able to relax and rest until they breathed their last breath. I've had families beg me to give MORE meds because they didn't think their loved ones were as comfortable as they could be. I could NOT give more meds. I would call the doctor and explain the patients' status. They would either OK it or refuse it. These were not murderous families looking for a Nurse Ratchet to finally finish off their loved one. They were thinking of their loved ones' comfort during their last hours.

"They are a cult." hahahaha
According to Wikipedia; The term cult usually refers to a social group defined by its religious, spiritual, or philosophical beliefs, or its common interest in a particular personality, object or goal.
We are health care providers who do not believe in the needless suffering of the dying.

I saved the best (of your comments) for last. "My Mother can inform also and she is a retired RN from the good ole days."
The "ole" days weren't "good" Mark. If you have been a nurse less than 20 years, you missed all the fun. ( Just like Veronica said.) Glass IV bottles that were heavy and cumbersome and, God forbid, if one should hit the floor! One of the hospitals I worked in had carpet (yes, carpet!) in the patient rooms. What fun cleaning up diarrhea or vomit when the patient didn't "make it" to the bathroom. The needle and syringe choppers put us at risk, not like the sheaths on the syringes that now protect the nurses. I remember when gloves were only worn for "dirty" jobs and there was no such thing as Universal Precautions. Did you ever have bedpan cleaning duty in the "hopper"? I could go on but won't. Don't glamorize the days in which you've never worked.

I wish everyone would pass away in their sleep but that doesn't happen. It's also not moral or ethical for anyone to be in pain or severe anxiety as they pass from this world. Maybe you'll change your mind when you are passing.

Veronica; I'm with you. ;)

I believe some writers who have lost loved ones, and whom used Hospice, need to point a finger at who is at fault. That's only human nature.

What has me so curious is where were these posters while their love one was being cared for, why weren't they on the forum asking for suggestions? Where were these posters when it came time to decide whether to use Hospice or not? The poster only shows up after their love one had transitioned. And their first time on the website they find a thread that has been off-line for weeks without recent comments.

Part of me feels that a person is pointing to Hospice because Hospice was called in very late in the progress. That the love one was already in the dying process, thus Hospice is only there for a week or less. Yes, it will feel like Hospice speeded up the progress, but it didn't. The dying timetable was already set before Hospice even become a subject to discuss.

Mark, please note that the amount of morphine used by Hospice is no different then the amount of morphine used by hospitals after a patient had major surgery. I remember having a morphine pump to help control my post-surgery pain. If morphine kills at those low dosages [same used with Hospice] then hospitals would have very high number of post-surgery patient deaths.... well, they don't.

One can only comment on the experiences they have lived through. If you never witnessed hospice speed up your loved ones death, then you will have a different opinion. Unfortunately I am such a witness. To administer morphine drip to someone in no pain and no restlessness can only be classified as "murder" as harsh as it sounds. For all those who want me to think otherwise, I say you did not witness and live through my families' unique experience, you do not know the details of the circumstances , and therefore you cannot say I am wrong.
I had the opportunity to speak to one of the few expert doctors on the rare disease called CJD, and he confessed he did not see the reason why morphine was used in this case. While hospice may be good for people in pain and agony at the end of life, unfortunately there are times where it is handled inappropriately as in our case and it is immoral and unethical to say the least.

I know of four families whose loved ones died in in-patient hospice facilities. All said the hospice did not permit food/drink/ice. One lady's 85-year-old mother went 6 1/2 days without food until she died. One guy was so desperate for food he put an appeal on his FB account.

"What has me so curious is where were these posters while their loved one was being cared for, why weren't they on the forum asking for suggestions? Where were these posters when it came time to decide whether to use Hospice or not?"  ~ FreqFlyer

FreqFlyer, I wished I had visited this forum before I brought my mother home for hospice care. When I met with the agency, I made it very clear that there would be no hastening of death. The agency assured me of such, and the hospital discharge papers note "palliative care." (The hospital sent mom home with prescriptions for her heart meds. and her cardiologist told us to give her milkshakes.) The agency said that hospice patients may live longer because they get "attentive" care. I bought into it.  Also, the agency promised physical therapy and all sorts of "perks" but delivered nothing except a cold, heartless nurse who, on the first day of visiting mom walked up to her with a syringe and tried to give her a narcotic. My mother, a retired cardiac nurse, lifted her hand and said "No." The agency DID NOT tell me that it would send all sorts of narcotics in what it called a "comfort pack." After we made it very clear that mom did not want narcotics, the "nurse" tried it again on her third visit and this time she was successful. While the aid and I were changing the bed linens, mom said, "Please do let me fall off the bed." With that, the nurse rushed up to mom holding a syringe, saying, "See, she is confused, she is confused." Before I knew it she gave her what I later learned was Haldol, an antipsychotic medication. The nurse FORCED it on mom. There was no medical need to give it to her.

Further, the hospital discharged mom with her heart meds, yet the hospice nurse showed no interest in giving them to her (so I did). She showed no interest in mom's nutrition. 

Another nurse - by telephone - convinced me that by giving mom morphine I was helping mom to breath and I gave her two doses over a twelve-day period, the second on the day she died. (Some folks on this forum have assured me it wasn't lethal, but I am not convinced.) I had no idea, and I believed the nurse on the phone.

 Each time the nurse visited mom, she announced - in front of her - that she would die by the morning. I finally had enough and planned to replace her, but it was too late. I am thankful that mom did not go into an in-patient hospice and die of starvation yet I am full of remorse for falling for the hospice sales pitch. Had I known this, I would have NEVER chosen hospice. 

Flymom,
I'm sorry for your loss. It is such a difficult time.

Does everyone know that YOU (the family or at least the POA) has the power to REFUSE any or all meds or services that hospice recommends. Nothing is written in stone. Anything can be changed.

Yet, I read on this thread that the meds were administered per protocol without any family refusal. Why is this? Is it hindsight? (Gee, we 'should have' stopped the Morphine or 'not given' the Ativan.)

Or is it that you were not present when the regulations were being explained to whomever was there to sign the papers? Or maybe you didn't read the booklet explaining the protocols of hospice. Were you aware you could take him/her off hospice at any time, even get him/her admitted to the hospital for treatment (which automatically stops hospice services).

When you saw that this was not what you wanted for your loved one, did you call their private MD for a consultation? Or, did you sit down with the hospice team to re-evaluate their medicine regime? All these things are tools you could have used to change the situation.
I'm not blaming you. It's a very heartbreaking time and no one thinks straight. But there are avenues open to the family. Most of the time, they don't take advantage of any of them, but then post here that their loved was KILLED!

With all due respect, what was your input? After speaking with the rare disease expert doctor, did you try to enlist his help and change what you didn't feel comfortable with?

I just don't see any family input but I see a lot of family criticism. Get involved with every aspect of their care.

Flymom,

I'd like to respond to the following:


"Does everyone know that YOU (the family or at least the POA) has the power to REFUSE any or all meds or services that hospice recommends?"

When I was going through the "hospice experience" I was surviving (or so I thought) on little sleep. It was the most emotionally taxing time in my life. I suspect this is the way it is for lots of folks whose loved one is in hospice. Sure, we can refuse and make changes but it can be difficult when one is completely vulnerable. Most of us like to think that trusting the medical profession is the right thing. 

"Yet, I read on this thread that the meds were administered per protocol without any family refusal. Why is this? Is it hindsight? (Gee, we 'should have' stopped the Morphine or 'not given' the Ativan.)"

I told the nurse not to give mom narcotics but she ignored my request and forced Haldol on her (see earlier thread.) Also, please don't be hard on those of us who are not medical professionals. I did not know what Morphine does and I had never heard of Ativan or Haldol before our hospice experience. 

"Or is it that you were not present when the regulations were being explained to whomever was there to sign the papers? Or maybe you didn't read the booklet explaining the protocols of hospice. Were you aware you could take him/her off hospice at any time, even get him/her admitted to the hospital for treatment (which automatically stops hospice services)."

I asked about stopping hospice as I was displeased with the nurse and the empty promises. I asked for palliative care. So the first thing a hospice representative told me is that they would take mom's hospital bed away. They are so clever! I've since read some hospice brochures, especially the part where they do indeed say that one can stop hospice. But then they so cleverly point out all the "services" one will lose . . . .

Hospice is BIG business and it preys on the vulnerable. It's only going to get bigger as the baby boomers age.

To illustrate my point, note what this hospice service states when one asks to revoke hospice. Boy, they know how to play on one's emotions! Clever!

"When a patient revokes hospice services, it also means revoking the benefits they may be receiving from the Medicare hospice benefit: home medical equipment and supplies, holistic or therapeutic services, home visits, etc."

Karen, I think you make a good point that it is not reasonable to expect ordinary family members to know in advance what effect specific drugs might have or what they're used for. Many of the heart-rending situations that have been described on this thread can indeed be blamed on precisely that issue: that the family members look back and feel that they were conned into allowing their loved ones to be euthanised, because they couldn't possibly understand at the time exactly what was happening, they trust the professionals, they don't ask questions, they aren't kept properly informed, and then they feel like culpable fools for not having spoken up. This doesn't mean that the drugs *weren't* clinically justified, it only means that you can't blame mourning, distressed relatives for not understanding why they were given.

I would like to see regulations introduced - they may already be in place for all I know in some jurisdictions, I hope so - that require any professional administering drugs to a patient on hospice to explain what they are doing to any non-qualified caregivers responsible for their patient, and to document as well as the drugs and amounts given the clinical justification for giving them.

But tell me. How would you explain to families that if they revoke hospice, they do obviously also revoke the equipment and services it provides? And they do have to explain that, to avoid families later getting angry and upset when someone comes to collect the alternating pressure air bed or whatever.