Is Accepting Hospice Under Medicare "Choosing to Die"?

38 answers | Last updated: Jan 10, 2017
A fellow caregiver asked...

Is accepting hospice under Medicare "choosing to die"?

Expert Answers

Hospice is a type of care that focuses on relieving pain and other suffering for patients nearing the end of life. To qualify forĀ Medicare-covered hospice care, a patient's treating physician must certify that the patient's illness is likely to be terminal within six months. Once hospice care is begun, there's no more medical treatment for the terminal illness itself.

Given this requirement of a prognosis of only six months to live, and the ending of treatment for the terminal disease, many people resist hospice because it seems like "choosing to die." Many people also fear hospice because they believe that all medical care will end. For several reasons, though, neither one of these fears should stop someone from choosing hospice care.

In the first place, the decision to choose hospice isn't final. If a patient's condition stabilizes or improves, he or she can give up hospice and return to regular Medicare coverage. All it takes is to have a change of mind about giving up treatment, or a doctor's advice to try a new treatment. Or for some reason the patient might not like hospice care and prefer to return to regular Medicare coverage. Patients don't have to give Medicare or the hospice provider a reason -- they can end hospice and return to regular Medicare coverage at any time.

Choosing hospice does not mean giving up treatment -- and Medicare coverage -- for all illnesses or conditions that a patient might have. If he or she has any medical problem other than the terminal illness itself, he or she can receive normal treatment for it and have it covered by Medicare Part B.

Also, hospice provides patients with specialized medical treatment for any symptom of the terminal disease. This care includes any drug needed to stay as comfortable as possible, provided directly by hospice, without having to go to the pharmacy, get a doctor's prescription, or use other insurance coverage. The same is true for medical equipment such as a hospital bed, wheelchair, walker, or the like.

Community Answers

P. lavedan md answered...

Another reason why hospice care may end is if the patient gets better.  The hospice medical director is responsible for determining if a patient has improved enough to be discharged (graduated) from hospice because death is now expected to be more than 6 months away.  The hospice team is responsible for making sure there is a treatment plan in place on discharge.  The patient continues treatment with their primary care provider.  The patient may go back into hospice at any time.

Hospice care can also last more than 6 months if the patient does better than expected.  The medical director of the hospice certifies that death is still expected with in 6 monthes.  Doctors can only state what they expect to happen in the usual course of life and death, we are frequently wrong when trying to determine a more specific time.

A fellow caregiver answered...

Hospice will treat signs and symptoms of illness such as a bladder infection or cold/pneumonia. What they won't do is order test such as blood work or a chest xray. An xray is only done if there is a chance a bone is broken. There main goal is to make you comfortable and to support your family. The Hospice staff monitors your status daily.

Sallyc answered...

Does Medicare pay for hospice care in a nursing home for a private pay resident? And is "failure to thrive" a condition in the very elderly with many chronic diseases that would qualify them for hospice?

Fiona answered...

Yes, Medicare will pay for hospice care in a private pay residence, just as they would if the person still lived at home. My Dad had hospice while living in an assisted living home, and he died within 3 months. Mom has it now, and there is no way of knowing how long it will take for her dementia to progress further. But I feel more comfortable knowing that there are nurses looking in on her every day, and ones willing to go out even in the middle of the night if she has a bad spell.

Joy answered...

My husband was in hospice for about 13 months even though he was in skilled nursing. It was the greatest decision I made. He was well taken care of by them, I had a team to support me in decision making, I no longer had to try to communicate with the staff which was difficult for me. They were truly advocates and professional caregivers who knew of resources that I did not even know existed. I could not have made that last year without them. Joy G

Poohtie answered...

After a more than 30 day stay at a local hospital, my mom who was diagnosed with stage 4 colon cancer which spread to her liver, lungs and breast, it was her doctors who admitted her into hospice care. The day that she was admitted into a care center across the street from the hospital, she lapsed into a coma which lasted only 2 days until she passed. I know that the staff took very good care of my mom and was assigned a hospice nurse, that made sure she was comfortable and cared for even in her unconscious state. No, making the decision to place a loved one who has no hope of cure from a terminal illness, isn't choosing to die, their bodies have already made that choice, we as caregivers must realize and accept that it is our loved one's choice, not ours.

Frena answered...

the biggest single issue that this question highlights is: who among us does NOT die? still today, there are so many whose comfort and ease from pain and fear could be helped profoundly by hospice care who don't get hospice because either their family or the dying one are afraid to even start the talk about dying. hospice aren't the Palin "death Panel". they don't bring you death. God, disease and human life itself guarantees you death of the body.. hospice folks are thrilled if you do so well you don't need them after a while. we can only have rational and compassionate approaches to palliative care for the dying when we all stop being such namby-pamby babies about death. i've cared for 98-year-olds who didn't want to admit that maybe perhaps they might possibly be dying. commitment to life is great, but scared to admit the possibility of death -- oh dear.

A fellow caregiver answered...

Hospice should be wished upon and welcomed when it does arrive. Not only for the terminally ill but for our nursing home senior citizens! I have seen elderly hospice patients do so much better when they are not overly medicated and they have quality time spent with them. I work at a nursing home and only wish that the State would allow our staff to have the time to spend caring for our elderly - that's all these folks really want and need is someone to spend quality time with them. When Hospice arrives, they finally get the undivided attention they truly deserve. Welcome the Hospice staff and know that your loved one is FINALLY getting the care they deserve.

Patricia g. answered...

The person, I say person because that's the way they are treated as a person not a # as in the hospitals. They receive wonderful care, are treated with the utmost respect as is the family members. It's a way for the person to leave this old world with their Dignity intact.

Judy boop answered...

I would only consider Hospice as a LAST resort. And when I say last, I mean after trying a feeding tube, and any other possibilities of sustaining one's life. My dear grandmother passed away in a hospice facility 2 years ago. She was living at an independent living center when she suffered a stroke while eating dinner one night. She was rushed to the hospital and stayed 3 days before they kicked her out. Since she was still fairly weak and needed more care than the independent living center could provide, the hospital doctor suggested that my parents check her into a local hospice facility. My parents are in their 70's and could not care for her in their home. They had already cared for her in their home as long as they were able. So, after much deliberation, they decided to have her taken to the hospice facility. My grandmother was alert and lucid when she arrived and had a wonderful conversation with the ambulance drivers that transported her to hospice. The very next day my grandmother was in a comatose state and was not responsive. Since hospice is all about patient care and not life sustainment, no feeding tube or water was offered.

I am quite certain that as soon as she arrived, they injected her with Morphine until she became catatonic. Then to "make her comfortable", they kept administering more Morphine. She passed away after 10 days of no food or water. I was very close to my grandmother, and it was very hard to watch her slowly die of starvation and dehydration. I don't see any dignity in the practice of hospice in any way, shape, or form. My grandmother was a very giving person. She cared for my father when he was dying of a brain tumor. She cared for me and my sister when my mother had to go out and work to cover the bills. She cared for her brothers and sisters when they became ill. My grandmother deserved so much more.

I believe that when a loved one is terminally ill, the best thing that you can do for them is to allow them to live out their end days in their own home. In-home patient care, whether it be for light duty cooking and cleaning or 24-hour skilled nursing care, is the dignified and humane way to live out the end days of one's life. Medicare/Medicaid should cover all the costs of this care. There should never be a need for anyone to live in a nursing home. Patient care at home should be the only option. I believe it would save the government millions of dollars if they demolished all nursing homes and put all their healthcare dollars into home health care. This is where the trend is going. And I can guarantee you that us baby boomers will not stand for nursing home care or hospice. So, you nursing home staff and hospice facility staff members have been duly warned! And we're not going to stand for laying around in wet diapers either!!!!!! In fact, you hospital doctors and nursing staff should feel guilty for kicking out elderly or terminally ill patients after 3 days and nonchalantly recommending hospice care to those patients just so you can free up a hospital bed. I hope your loved ones never end up in your hospital in need of continuing care as you'd have to make the tough love decision to send them off to hospice to die! Shame on you! If you are in the medical profession for the money and not patient care, you do NOT belong there. There are patients who count on you and trust you with their lives, not their pocketbooks!

Frena answered...

I'm so sorry for your loss. at the same time, i think it would useful for your own sense of guilt and anguish to become better informed even about the natural processes of death and dying.

i have spend time with a number of people dying, some under hospice care and some not. the natural process of dying is that in the closing weeks or days of life, the dying person has no interest in food or drink. this is part of processes of the body itself dying. if you were to force drink into that person, they would probably choke and then aspirate the liquid into their lungs and die of pneumonia, a process in which lungs gradually fill up with fluid.

as for feeding tubes: i really urge to look at Duke University Medical School's extensive studies of the using of feeding tubes with the dying and with the old who are dying. all the studies results seem to demontrate that elders gain very little enhancing results from feeding tubes being inserted, but do get a great deal of discomfort. and, of course, in its use with elders with dementia, they will rip out the feeding unless they are tied down and their hands restrained by bindings.

a friend of mine watched her sister-in-law go through some of these processes. the nursing home, against family wishes, inserted a feeding tube (this is no longer legal to do without family permission). every single day for the next year, she suffered from extreme vomiting and diarrhea because her body was simply not able to take that nutrition into her system (again, pretty normal in dying). oh yes, and of course she couldn't speak because of the feeding tube. they got a court order to stop the torture and within two days she had died, but not before being able to express in a hoarse whisper her gratitude to them.

outsiders think of feeding tubes as little lifelines that keep you alive and sparking, but i'm sure that you would find if you went yourself to visit more people in that position, they wouldn't be sparking too much. it's an uncomfortable invasive process that people often have to keep sedated for, or tied up to stop them trying to remove the discomfort from them. they can't speak. they can't drink. a feeding tube isn't eggs and bacon and coffee -- it's a sludgy thick yellowish goo made largely of chemicals being pipelined direct into your stomach.

speaking as a boomer with two decades of caring for elders, i absolutely would NEVER sign up for feeding tubes for myself and i definitely WOULD sign up for hospice.

i understand it's a very personal decision, but please get fully informed about all of this before you continue what i really suspect is a profound sense of loss and rage over your dear grandmother's passing. you think she'd still be with you, but she wouldn't.

by my reckoning, from what you say she was in her 90s. she didn't die of no food and no water. she died of dying. she was very old. her health was in great jeopardy and she was dying.

better you care for yourself now in finding support and love for your own processes of grieving. the more you enter that process and go through it with support and help, the more you will let go of your sense of abandonment and be able to realize that you will never lose the love you had from her. she may be gone, but all the love she gave you is still with you.

Shaf answered...

My mother lived in my home the last 30 days of her life. She had cancer. Her doctor suggested hospice. I am so glad we did that. She had as much pain medication as she wanted. We were able to bring in a hospital bed, and oxygen. We had a nurse nearby and a health aid that came in and helped her bath. We had a social worker that answered some questions for me. I wouldn't have traded that time with her for nothing. I firmly believe in hospice. I was able to care for her the way she wanted and I didn't have to worry about money.

Judy boop answered...

My response is directed to Frena. I am not suffering from a profound sense of guilt or abandonment as you described. I have nothing to feel guilty about as I was not involved in the decision-making process of my grandmother's health care. But, I do miss my grandmother dearly and I feel her love every day. I do appreciate your input regarding my grandmother and her experience with hospice care. Although, I feel that you did not grasp the fact that my grandmother was able to speak, swallow and eat before she was admitted into the hospice facility. As you would say, she was able to take nourishment into her system. I did not want a feeding tube for her while she was in a catatonic state. What I was trying to convey is that the hospice facility put her in the comatose state by injecting her with Morphine as soon as she arrived. I understand that hospice wanted to make her as comfortable as possible. But, to inject Morphine until a patient is comatose is really going too far. My grandmother suffered from CHF for over 20 years. She endured surgery to install an artificial heart valve. She was a strong devout Catholic woman with a very healthy appetite right up to the end of her life. Quite often, she ran circles around everyone and had an abundance of energy. Near the end she suffered a stroke. She survived the stroke. She was able to speak and eat with assistance. She sat up front and chatted with the ambulance drivers while they drove her to hospice. She was able to admit that she was not in the best of health and possibly close to death. In fact, her response to asking how she was feeling was that she had one foot on a banana peel and one foot in the grave! But, she was tough and had a strong will to live. My grandmother did not die from CHF or a stroke. She died from a medically induced coma administered by hospice. I understand from reading another care member's story, that hospice is supposed to convey to the responsible family members that the patient's lungs will begin to shut down after administering Morphine. I do not think that conversation ever took place. My parents wanted my grandmother to be comfortable, not comatose! We all initially thought that hospice care would be good for my grandmother. Although, our daily visits of watching her become more and more dehydrated and eventually starving to death proved otherwise.

I spoke with the hospice staff personally and they explained the process of dying. So, I do understand the different phases of dying. I'm also not what you would call a "namby pamby" baby about death. I could accept the fact that my grandmother was going to die. She lived a long fulfilling life and I know God would be there to greet her in Heaven with open arms. What I don't accept is the inhumane treatment given to speed up that process. My grandmother was not given the chance to go through the slow, natural and gradual failing of her God-given body. She was induced into a coma and then her family was subjected to watching her die of starvation and dehydration. Let me tell you, it's a terrible thing to witness. My grandmother, parents, and siblings had to endure 10 agonizing days of this. I walked around that hospice facility, checking things out, peeking in to catch a glimpse of the other hospice patients. It's a big beautiful building with many large private rooms and several kitchen areas available for visitors. There's a piano and bird sanctuary in the main gathering room. But, I found it quite odd that none of the common areas were being utilized. The patients never came out of their rooms. There were no family members wheeling their loved ones down the hall to gaze out the big picture windows. It was very haunting, like the old 1978 movie starring Michael Douglas called, "Coma". I do understand that it's a very private time where family members want to spend time alone with their loved ones. But, these patients are still alive and they should be encouraged to walk around and get the most out of their last days on earth. Just because their doctor has basically given them a pink slip in life doesn't mean they want to spend it all doped up and in a coma! I don't know if there's a hidden agenda with these hospice facilities, but from what I saw, they seemed to be in the business of housing bodies that they've medically induced into comas while they wait the 2 to 10 days it takes for those bodies to shut down so that they could be shipped out to funeral homes! Maybe they receive kickbacks from the funeral homes. I really believe these facilities should be investigated for possible improper and unethical practices.

On the other hand, home hospice care may be a different situation. I would consider it for a loved one if all other medically possible procedures have been tried. Even then, I would certainly monitor hospice staff very closely and have them explain in detail every drug they were intending to administer. I have no problem with having a loved one given medication to alleviate pain. I do have a problem with over medicating a patient until they are unaware of their surroundings. If their pain became so severe that they could not withstand it, I would even be fine with hospice administering a higher dose until the patient was comfortable. I'm certain many hospice caregivers are wonderful, caring individuals. Unfortunately, that was not my experience.

Claire meinerth answered...

I have chf and coronary heart desease not driving am comfortable, no pain I was considering hospice dr isnt optimistic about how long I will live but I seem and talk like old person but getting along fine with walker and oxegen, I will be 84 in april which surprises me

reading these posts have made me afraid of hospice and think maybe I should go along with woman that cleans shops, my lifeline, rescue 2 minutes away and hospital 5 minutes away and with my insurance can call nurse 24 hours a day, 7 days a week. I didnt know you had to give up medicare and I would like to continue to see my dr and live as long as I can comfortably. I will consider seriously your answers I am glad this discussion came at this time God bless, claire 26

Frena answered...

Judy Boop, i understand your feelings about your Grandmother and i'm sorry for the loss of her presence in your life.

However, i frankly have to say i simply don't believe you that Hospice put her directly into a deep coma with morphine. i just don't.

it seems like a very bizarre suggestion to me. beginning with the medical use of morphine (as opposed to recreational use by amateurs) simply would not bring about such a result. probably your Grandmother had further complications from her stroke. or further strokes. that's very common and, really, much more likely than that Hospice killed her.

however, if you really believe this, you need to talk to the Hospice Director and clarify the situation and seek to know what exactly happened. then, by all means, follow through with the right official steps for investigation.

And for others reading this very long track of personal stories, don't let one person's personal experience make you feel frightened. neither do you have to give up Medicare -- hospice services are part of Medicare's network of service providers and you can return to seeing your doctor any time you want to.

it's more a choice about what other treatments you are choosing to have. when a person chooses hospice, they are also choosing not to follow through with any more treatments-against-disease. hospice is palliative care of the dying. care which concentrates on physical comfort, emotional support and help to all involved with the patient, spiritual support for those who wish it and which allows use of pain-relieving medication to ease bodily and emotional pain and suffering.

anyone who isn't really sure about what it means could get involved in visiting with those to whom Hospice is providing services. that's actually much more useful than letting other people's scare stories frighten one.

and remember that death and dying are very scary to lots of people. Even 99-year-olds are reluctant to admit that probably death is near.

Wkirksey answered...

Well, I have to both agree and disagree with the Hospice Option. Both of my parents were on Hospice. My dad died of lukeumia in 1998. He was on Hospice and his experience with Hospice was without a doubt a benifit. However, My mother was also on Hospice and died in December of 2010. I believe that puting my mother on Hospice was a bad decision. She had C.O.P.D. , dementia, vascular disease. Well, she initially was able to keep care of herself and I would go stay with her when I got off of work. Later she became worse and was hostipilized and then released to a nursing home. I eventually had to quit work and take care of her full time. I took care of her for about six months then My sister took care of her the remaining time. During my sisters take care of her, we placed mom in Hospice. The nurse would come by and take care of her once a week. During this time my mother developed a bad bedsore that became septic. I begged my mother and sister to get my mom to the hospital, but the Hospice nurse stated that if she was to go to the hospital that she would be dropped from Hospice. Anycase, about a month later, mom developed a problem of not being able to swallow or eat anything. We finally took mom to the hospital where they administred antbotics. After three days of antbotics the doctor stated they done all that they could do and suggested that we place mom in a Hospice hospital. This is were I have the problem with Hospice. Mom during the entire stay at the hospital still was unable to swallow or eat anything. She begged me for food and water during this entire time. Finally I convinced the doctor to administer an IV to provide her with food. On the six day Hospice came in and stated that they would have to deny her adminision. They stated that they would take her, if we withheld her antbotics, her IV fluids, and her IV food. Otherwise, the hospital was going discharge her and since she could no longer swallow or eat anything, I was unable to take care of her. So, I was forced to drop the antobics, her IV fluids and her IV food to get her admitted into the Hospice Hospital. Thirty six hours later, she died. In my opinion, the Hospice requiring me to withhold these things to get her into hospice was the same thing as murder.

Malvasia answered...

The morphine thing is irritating! When my mom got home from the hospital I DID NOT begin the morphine nonsense as hospice suggested. It is nearly four months since she left the hospital...I still haven't given her that crap! She isn't in pain, so what is the point? I often think hospice wants the patient on morphine to help the family get more rest, which I can see how they would perceive that as helping. My mom does all sorts of arts and crafts when she is on the up side of the rollercoaster, so I will leave the morphine til the VERY END.

THANK GOODNESS, LIKE MY MOTHER, I HAVE BEEN ANTI-ANY-DRUG MY ENTIRE LIFE. My suggestion for everyone who is caregiving...READ EVERYTHING ABOUT EVERY DRUG BEFORE ADMINISTERING. Go to the alternative and integrative websites, or even better, a physician who is integrative (they are out there).

Joy answered...

It sounds like your mother is doing well under hospice and perhaps does not need morphine at this time. My husband was under hospice care for almost a year. He did not need and was not given morphine until close to the end. Then is was in a very small dose so that he was pain free, but hot "out". I appreciated that.

A fellow caregiver answered...

Hello Everyone,

I've read the thread of posts, and decided to chime in, as no one has mentioned the importance of researching which hospice to use. This will be the single most important decision you'll make, once you've chosen to go into a hospice program, and the choice is YOURS. There are many out there, and each one is run differently. Most cover a wide range of territory, so it should be possible to choose from more than one. My own experince has sadly been very negative, (with the VNA) and I cannot stress enough to everyone who is considering going this route, DO YOUR HOMEWORK, and choose your hospice carefully! Seek recommendations from friends and/or family. Discuss in detail with your Dr., find out if he/she will 'follow', and remain involved with the care of your loved one, so that you can maintain some continuity of care. This is important for the caregiver's peace of mind, if nothing else. Find out what medications will and will not be covered, and understand that hospice will only cover medications related to the condition for which the person is admitted to the program. Understand that it is YOUR and YOUR LOVED ONE'S wishes and instructions that are to be obeyed and respected, and do not let hospice staff undermine and/or dictate otherwise. They work for YOU, you do not work for them. Don't be afraid to ask questions, and by all means, speak up and go straight to the director of the organization if you are not happy with what is going on.

This is a time in life filled with enormous stress and emotional strain. Hospice should help to alleviate some of it, not add to it.

Sbasso answered...

My dad was in a nursing home for almost three years and we watch with sadness his progressive deterioration. He had rights to Veteran's medical services as he served in the military in his youth years. On one of my recent visits "home" Dad had been taken to Veteran's hospital as he felt ill and weak. When he got there, his urine was very dark. After many tests it was found he had a stone blocking urine from one of the kidneys and that had caused a badly kidney infection, which then spread thoroughout his body (sepsis). He was treated with very potent antibiotics. We provided outside care for him in the hospital so he could have attention and caring 24x7. Although Veteran's hospital is one of the best, they also have a lot of apprentices and do not waste any opportunity they can get to subject a patient to Xrays, scans, etc etc, as it teaches the rookies. Dad condition got very bad, he had a feeding tube and hated it, his hands with mittens so he would not pull the tube out - he was suffering and not getting any better! We (Children) finally made the decision to let him be and free him from all suffering. We lucked out that a bed opened up in the hospice area of Veterans Hospital. I cannot express the difference in care and philosophy and how wonderful it was to have Dad there in his final days - they even had a little dog pet that climbed on patient's lap and provided love and affection. We surrounded dad the whole time with prayers, singing, love, affection. We knew he was dying and accepted it, thus concentrated in making his journey (his transition) comfortable for him and for us children too. We filled the room with pictures,had soothing background music, we rubbed his body with rose oil caressing him all the way, we talked to him, whisper to him, and told him how wonderful he had been all his life, how much we loved him, and that it was okay to go. Dad hung on to the very last breath and die peacefully. We will forever be grateful to the staff at the veterans hospice and to God for giving us the opportunity to spend those precious moments with him.

Joyg answered...

Hospice can also give you a team that supports you. Remember, we all come into this life with "an exit date." We just do not know when that will be. "The only way out is through." Mary Morrisey

Phdoe answered...

My father passed away last Weds after being starved and dehydrated by hospice. Hospice will lie to you (tell you what you want to hear), disobey direct orders by the HCPOA and do what they want to hasten the death of your loved one.

Dad had parkinsons and after suffering from his fourth bout of pneumonia he was released from the hospital and we selected a wonderful (temporary till he regained his strength) nursing home for him to be rehabilitated at. He ate more and more each day and the immediate family was told that it was fine for him to cough after swallowing as this would help keep the thickened liquid/pureed foods from his lungs. After a few days there where he had been eating more each day, the nursing staff corralled my sister and told her that he appeared to be getting pneumonia again and that he should be put on hospice. The RN that morning, ordered a 'no food/liquid' for him and we were faced with the decision to get him a feeding tube. Dad was asked several years before, his thoughts on a feeding tube and his response was "I'll do what is necessary". The nurse talked us into a nasal tube versus a stomach tube saying that if his stomach did well with the nutrition, then they could order a stomach one. We had talked to Dad about a stomach one all along and when he had the nasal one inserted, he pulled it out.

We had wanted to just keep feeding him as he requested; and let the 'old persons friend' pneumonia take him if that was meant to be.We were told that the nursing home would release him as they would lose funding for a patient that is losing weight. This forced us to hire a hospice. This hospice told us he could keep a hydration IV that he had and that they would not administer morphine (Dad never took more than a tylenol for any pain his whole life). Hospice appeared to be willing to work with us and they seemed nice so we hired them.

The first business day they had Dad, I came in to see him after work and the hydration IV had been removed. I called the hospice nurse and asked her who authorized this? She said a member of the family. Now, my sister, me and one other was on his HCPOA; all three of us had no knowledge of requesting they remove this IV. In our minds, the IV kept him comfortable and allowed him to not die of dehydration/starvation and we would let the pneumonia take its course. My father died 10 days after that IV was removed/no food was allowed to be given to him/ morphine was administered along with atavan within 3 days of the IV being removed and without the families permission.

I would never recommend hospice to anyone who can't demand their rights themselves. Hospice is our governments way of removing the cost of caring for our elderly and hastening death to ones they view as not productive citizens. God help us here in the US when obamacare goes in to affect. In our later years, this will become the norm.

Oh, by the way, his death certificate lists his death as "failure to thrive" not pneumonia as we were told he was dying of......failure to thrive is code for starvation.

A fellow caregiver answered...

In response to PhDoe- I am a speech therapist in a nursing home and I've worked with many patients with Parkinson's and counseled many families about end-of-life and feeding tube issues. First of all, it seems as if the nursing home and hospice company were negligent in your care and I would urge you to contact your state's health department to file a complaint so that they can investigate. I would hate for this to happen to anyone else. I am curious if your loved one received a swallow evaluation by a speech pathologist before it was determined that your dad could not safely eat by mouth. I am also curious if he had a VFSS which is a running x-ray that is done to analyze the safety of eating and drinking. Also, the doctor should have discussed your options with you which included: a feeding tube, to continue an oral diet for quality of life despite the risks of aspiration, and/or hospice. The doctor (and not a nurse) is required to give you the information so that you can make an informed decision and once you have made that decision, your wishes are to be followed. If you wanted to feed him, you should have been able to feed him. If you wanted a PEG-tube (stomach tube), he should have received one. There is no need to place an NG-tube (nose tube) first unless there are special circumstances. For your piece of mind, I will let you know that dehydration is considered to be a less painful death than pneumonia. Aspiration pneumonia can cause significant difficulty breathing, thick secretions, tons of coughing, and the need for suctioning which can be very painful. Dehydration causes the production of endorphins which results in a state of euphoria and is much more comfortable. It sounds like the hospice company you used was not very good and did not provide enough counseling and didn't follow your wishes. My own experiences (both professionally and personally) have been wonderful. My grandfather, in fact, was placed in hospice care this afternoon. Hospice is definitely not the government's way of getting rid of sick people so they don't have to care for them. In fact, the doctors and nursing homes/hospitals who recommend hospice (the government can't recommend hospice) make more money by keeping people alive and by providing costly care. If you ever encounter another opportunity to consider hospice, I urge you not to veto the idea immediately. The care is top notch, in general. I hope you are comforted by some of this information and I also hope you do contact the health department.

Lliam answered...

Who doesnt believe it? Really my dad ahd long converstion with me sunday went to grand daughters comunion a day later hospice has him all drugged up he can speak and my brother and i keep trying to get him to goto va. But they have my mother brain washed they just keep giving more and more pain meds he is peeing on him self he took shower and got dressed two days ago and ate breakfast lunch and dinner now he cant speak a sentence when he come to they give him more and he is out again.we believe they a murders and someone has to stop them brother and i are going to steal our dad and bring him to va becuase they have mother brain washed

A fellow caregiver answered...

My 93 year old father-in-law is receiving hospice care in his home. He has 24 hour care that is overseen by myself and is suffering from CHF along with other heart problems. I was assured from the beginning that he could continue his meds for chf, prostate etc. They will only pay for pain meds and have encouraged me to stop all other medications, however it is not something that I have to do. To everyone debating hospice care for their loved ones, remember it is imperative that a loved one should be overseeing the patients care. I truly believe that had it not been for my insistence about using pain meds as needed vs, every 4 hours, my father in law would not still be alive. In my experience it appears that hospice does lean toward "drugging" the patient. Just remember, just because you choose hospice, does not mean you do not have choices. Use your ears and eyes and ask questions. Final decisions are still your choice. Don't let anyone make you believe otherwise. I know my father in laws days are numbered and I will not let him be in pain, however I will not put him into a drug induced coma. Speak up and remember that you have the final say regarding your loved ones care!

Kjollye answered...

My wonderful mom passed away on July 5. Not having her here anymore is hard enough but the guilt is a whole other thing. My Dad died in 2006 of Parkinsons and we had him in home hospice (We would have never placed our parents in a nursing home or hospice center). We were thankful to have hospice for my dad. It was very hard to withhold food and water but we were told that he was not able to swallow anymore ( I thought it was because of the disease) but I never questioned it. However, my mom was 83 (turns 84 7/29) and was place in home hospice on 6/7/2012 and was on very low dose of morphine , she was experiencing pain, but she seemed to be doing better as far as happier. Some months earlier my mom had stopped eating as much, talking as much and sleeping alot more. Text book to what hospice says takes place when the body is dying. I understood that and had to deal with it. My mom also had what hospice calls a energy surge on the Friday/Sat before she died , they also said that after that she would crash. Close to death she will stop eating and drinking and that we are not to force anything on her. We were able to give her water via the little sponges on a stick. Well that Sunday she stopped eating and drinking and didn't respond to us very much. During the next three days her stomach was growling and she would say help me, she seemed to really react to the wet sponge, even bitting on it sometimes, but clearing was relieved. Can you imagine how helpless we felt? When we asked her what she needs she would mumble and we couldn't understand. We thought maybe she was talking with someone we couldn't see because that had been going on for about 1-2 mos. On her July 5th, 5 days without water or food, my mom went into a coma and died later that night. Last night I was watching tv with my husband and all of a sudden the thought that I may have starved my mom took over and I have been worried about this. I have always been concerned of the use of morphine, but with my mom it was such a low dose and wasn't increased until close to the end but I am concerned about this because of her stomach growling and her pleading for help. I pray that my mom was not thinking in her final days that we were trying to force death on her sooner that it may have naturally. Also, I want to say all in all I was happy that we had hospice for my dad and mom however I do have concerns. I love you mom!!

Annie annie answered...

My main problem with Hospice, other than minimum visits with my mother with dementia, age 93, in the nursing home, 'is the outrageous fee they charge Medicare!' For the past 5 months, the charge is 7200 per month. Medicare pays Hospice 4200 but they do not earn it since my mom is in a nursing home and being cared for by the nursing home aides. All Hospice does is give her a shower once a week and visit her a couple times each week and write it in the tablet. NO hands on other than the shower.

Spurgeon answered...

Well, this is all very interesting here!

I want to preface this by saying that if you are in SEVERE pain with cancer, etc. you would probably be helped by Hospice.

My 81 year old Dad died on thanksgiving day 2012. He had been bed-ridden for over a year and my Mom took loving care of his daily needs. He was totally competent and knew what was going on. His doctor recommended Hospice as a help to my Mom in the care-giving duties. SO, caregivers came 3 times a week and they were wonderful.

You have to understand when you "sign up" with Hospice that you are given a little package of meds that remains in your refrigerator until they are needed. My Dad never had ANY pain throughout his decline...for which we were very thankful. My Mom made it clear to the Hospice nurses that came that she would NEVER use the Morphine, etc. in the package unless he was in SEVERE pain.

My Mom was told that Hospice gives the care-giver a respite - wherewith she could put my Dad in a "Christian" Hospice facility for 5 days. She was excited about that but stressed over and over to the nurse that NO meds were to be given to my Dad other than his 3 "regular" ones. The nurse PROMISED again and again that her wishes would be granted, so my Mom believed her.

Well, my Dad went into the Hospice facility on a Tuesday afternoon and was soon visited by his pastor -- they were talking, laughing, my Dad and Mom were having a good time and he even ate some cereal and other things before she left for the evening.

My Mom went to visit him in the morning and she noticed a patch behind his ear.....and was furious. She took it off and had "a talk" with the doctor. My Dad was a ZOMBIE - couldn't communicate at all and was practically comatose. His blood pressure was 78/48. Typically he had much higher blood pressure.

Since we were PROMISED that NO other meds would be given to him we did not become suspicious (other than the obvious patch). I went to see my Dad Wed. afternoon and he was completely "out of it" and could not converse. His eyes were rolling around in his head. We asked the nurses why he declined so rapidly (less than 24 hours!).....all the nurses we asked said "when you brought him here you are giving him permission to die". WHAT??????????? No, we did not give him permission.....we assumed he would die a NATURAL death in God's own timing. We believe it is a "programmed" response to family members.

I stayed with my Dad throughout the the wee morning hours a nurse came in to his room and before I knew it she had given him a shot (to loosen up his secretions she said). Within 15 minutes my Dad was dead. Just read some information about giving morphine, etc. to someone with COPD and emphysema, which my Dad had both. They sedated him to death and we believe he died of respiratory failure. They put "failure to thrive" on his death certificate. Not sure how they came up with that.

We KNOW that my Dad's death was hastened with Hospice. We are now meeting with the doctor/staff/administrator to see the medication report as we do not believe they honored our wishes. We plan to file a suit - for the other people that follow, as it is too late for my Dad.

In case you want to check it out I have found a wonderful website "Hospice Patients Alliance" based in Rockford, Michigan. They are well aware of the evil things Hospice is doing....and will keep doing until they are held accountable. Become informed and pass the word. WE could be next.

Hans0708 answered...

If anyone out there wants to know the truth about hospice, they should check out the following website: If the liberal news media would ever do an investigation on hospice facilities, it would make "Watergate" look like childs play.

A fellow caregiver answered...

My mom has been on 3 hospices and may be released soon. I firmly believe that anyone in a hospital or on hospice needs an advocate. Medication has been suggested for her anytime she exhibits sadness, a little pain, some anxiety due to her situation. I made it VERY clear that I am to be consulted before any medicine is given to her. I have a paper with my instructions typed up and taped to her wall. I have a sign in sheet for anyone from hospice that goes to visit her. I monitor what happens as much as possible without being there 24/7. Will her life still end in starvation, heavy medication and dehydration - maybe. There doesn't seem to be an easy way to die. It is awful whether it is in a hospital or in a care facility or at home. Depending on the age of the person and/or their condition things can go sour fast. From my perspective you have choices as to what you hope to accomplish. My mother is bedridden and that won't change. My goal is to keep her comfortable and let her live as long as possible without subjecting her to medical procedures that are usually accompanied by discomfort and anxiety unless pain medication is used. I totally agree that to die at home would be best but there is a good chance you will still be confronted with the same decisions at some point as to do you keep someone alive artificially.
My friend died at home at age 42 and being so young it was a long, awful process but at some point she would have to be kept alive artificially. Meanwhile the only alternative was to use morphine to ease her pain. For many years my mom has told me about people in her senior community going to nursing homes and shortly dying. I now relalize that just moving an older, compromised person can be their demise. Did the nursing home kill them? I don't think so but the total cirumstance did. Unless you can be there caring for your parent 24/7 or have the money for others to do that in their or your home, there will always be some doubt about what could have been done better. You can get on or off hospice anytime you choose. You can change hospice anytime you choose. When My mom had her appendix out at age 85, the doctors prescribed medicine for her without my permission. They took her off though at my insistence. You do your best and hope that you can live with what happens. It will never be easy.

A fellow caregiver answered...

My 85 yr old mom has been in hospice care for the last 3-1/2 months. She has blood clots in lungs & leg as well as advanced dementia. I was told by main hospice nurse early on NOT to feed her because it took more energy for her to eat. I ignored her request and we continued to feed her small amounts and I was able to spend the holidays with her which I will always be thankful.

In the first hospice month, artropine & morphine were administered by me via hospice contact to relieve excess saliva & pain at one point but I have since learned that the suction machine & Tylenol Extra Strength work instead and don't put the patient in an out-of-it condition. Of course, this was never told to me by hospice.

I have now passed the mark of trying everything to "fix" her. I have realized that making her comfortable is most important. She just wants to sleep at this point. We recently went from pureed foods a few weeks ago to liquids to ice chips a few days ago, due to much coughing when swallowing. I decided to take her off all medicines (w/o contacting hospice) since she couldn't swallow & I didn't see the reason to be questioned. Her body is shutting down, I get it. Taking her off meds didn't seem to make a difference except blood pressure remains a little high.

I noticed today she was able to swallow liquids again without coughing. So we're back to hydrating her and giving her spoons of protein shake with water & thickener. It's quite a back and forth battle of whether or not she's going to make it till the next day or not.

I'm blessed to have her at home and have a great on-hospice nurse that comes in 5 days a week to help me with her & give me some time to get away & regroup.

I highly recommend when having a hospital bed in your home, ask for the electric mattress to prevent bed sores, pressure ulcers and blood clots. Hospice never advised me of this option. I contacted the medical rental co. to change mattresses and hospice never questioned me about it. I was advised by one of the private nurses to do so. She hasn't had any issues since and I think it should be mandatory for all hospice patients to have this for prevention.

I know the day is coming for her to pass on and I feel I have done everything to keep her comfortable. Through this process I have learned that (as posted earlier) you have to be your own advocate and listen to everything that is said by hospice, private nurses, internet, etc and then make your own decisions. They may not always be right but if you are doing it out of love to find a better way to cure your patient, you can't beat yourself down for trying. I leave the rest in God's hands.

A fellow caregiver answered...

My Mother was just forced into an early grave thanks to Hospice. I would rather be pushed off the end of a cruise ship that be in Hospice. My mother was physically in great shape with a bit of Alzheimers. She was put into a nursing home and immediately ALL physical activity including even getting her out of the bed suddenly stopped! Her Aerocept was discontinued and she was given zombie drugs. Her last 5 days of life she was given NO food...NO water after ONE choking episode. The doc said she had a "Death Rattle". I am a RN...she had NO death rattle. Just a bunch of LIES. Jack Kevorkian did nothing more than Hospice. I am spreading the word....this is all about $$$$ folks. I did not have the POA or she would not have gone into Hospice AND she would still be alive! HOW can anyone claim to be a Christian and support this practice of pushing folk to the graveyard? It was not "God's timing" ...It was an older sibling along with Hospice deciding when this precious hard working hard loving woman would die. Seriously....not acceptable ever again in my life!!!! I will fight it and I will also warn some of you that some docs who are Hindu believe in reincarnation so also don't think it is a big deal to go ahead and let you die. I've now had two relatives that were allowed to die when their problem was fixable. No attempt was made to fix the problem because they were OLDER!

A fellow caregiver answered...

I wish my mother would go into hospice care. My mother didn't go into rehab to learn to change and deal with her own bag. My mother never did want a nurse in her home, and it is in and out of the hospital with her, because she hates hospitals. My mother set me up to be her nurse, never asking me would I or could I live there and take care of her. My sister was no help, but that was ok with my mother. My mother wanted me and her sister to be the ones to take care of her. My mom's sister told her I can't take care of you. My mother has played games to stay put of the hospital, and runs to her primary care doctor than to her cancer doctor for help. The primary care doctor tells her.. you should be going to your cancer doctor. All of her doctors are getting tired of it too. I call over to talk to her and all you hear is complaining that no one will help her, but when my mom's doctor mentioned hospice, my mother told me , he talks putting me in hospice. Talks to me like I am dying. I am not going to die until I am ready to die. My mother is nothing but bones. My mother weight that I knew of in Dec-Jan was 72 pounds. My mother didn't want to do a thing about her kidney, because she didn't want to do anything that will keep her in the hospital. Now she is in kidney failure. My mother had breast cancer years ago, and now it has gone into her bowels. My mother wouldn't of went for an operation the second time, but she had talked herself into believing that she could get put back together. The doctor that took her apart said so, but she wasn't taking no for an answer. My mother was blocking up then and more bowel was taken out, which was good for her. My mother ran to see because I couldn't help her anymore, not because she thought she was blocking up. My mother did it because she didn't want to deal with her own bag. I stop to help my husband that was having his own operation. My dad which is 85 years old is changing her bag. My mother has even sat on the couch refusing to go to the hospital, and she was in urgent need of bags of water. My dad called me scared, and I went over and finally got her to go, and she about talking weird by then. Yes, this woman is as stubborn as they come. The nurse at the cancer doctor place yelled at her, because she calls her problem stomach flu. My mom said, she yelled at me, she told me what I got isn't the stomach flu. You see, she tries to go to her primary care to get something for infection or whatever and avoid her cancer doctor, if she can. Driving me and my dad nuts, and doctors and their stuff nuts too. Well, up to date. The woman is still trying to avoid having a nurse in her home and to stay out of the hospital. My mother had her scan (that was hard for her to get too), which wasn't good at all. Not wanting me to know how bad, because she knows I will say you need to be in the hospital. My mother tells me there is one tumor growing and is pressing on her bowel, which is making her hurt. My dad told my sister, because my sister text me said.. cancer is all in her lower part of her stomach. Taking care of her at the start, and knowing it was like this before, means it is all growing again. The first cancer doctor (yes she drove the first one nuts lol ) said that the second round of chemo won't help as well as before. This cancer doctor she has now put her on the chemo pill. Too bad it wasn't the other one where she has to come to his office, then the can see how she really is and how she covers up and acts like she is ok. My mother also throws up after she eats. I wish God would show up and at least get her into hospice care. My dad and I are so stress and tired. It has been over 3 years dealing with this. First week in June will make it 3 1/2 years, if she is still with us by then. Mind over matter and the will to live really work, because her is the prof. My mother can be very mean and hateful at times too, and say the most terrible things to ya. Like he has told me.. I'll kill you too, and I wish you were the one on the operating table. I love my mother, but this I will never forget.

A fellow caregiver answered...

My mother repeatedly said she did not have pain. She was in hospice for "failure to thrive" (congestive heart failure). Nurse decided to put her on morphine anyway. Within 36 hours my mother was dead. She was most definitely put in a coma deliberately and I have all the records to prove it. They started her on 5 mg. morphine (too much for her little body) and when she showed signs of distress (opioid toxicity) they pumped more and more morphine into her. Within a half hour of a 5 mg. dose, the hospice nurse gave her 40mg., and some more Xanax to chase it down. Mother went into a deep sleep with slowed breathing and they came in and gave her another dose of morphine. She died 30 minutes later. She didn't die from her congestive heart failure. Her resp. rate was 20 - 24 when they started the morphine. Her kidneys were improveing from 30 GFR to 50 GFR. They deliberately stopped taking her vitals 7 hours before she died. Why do you think they would do that? I've worked for nearly a year at digging up the records, chasing down morphine prescriptions and learning how to understand labs and nursing notes. My mother was deliberately killed because she was on hospice too long (ll months). And, you can believe me, this is true. Beware of for-profit hospices.

Shirl girl answered...

I totally agree with the person who wrote about her grandmother being comatose due to the administration of morphine and speeding up the dying process. I lost a sister almost a year ago, and it is a repeat of your story. Hospice had indicated that the morphine could be given every 2 hours as needed. A private care provider was doing just that. When I questioned her about the morphine, she said that she could give it to her every 2 hours prn for pain, I told her I hadn't seen any indication of suffering from pain and her daughter told her not to continue doing that, However, by this time she was in a deep coma and I assume the damage had already been done, especially, since her lungs were already compromised due to copd, A friend of mine who is a nurse told me that morphine can shut down the respiratory system. Hospice can be helpful but you are absolutely right----you have to be the patient's advocate. You are in charge of whether or not they receive pain medication and how much and how often. I don't know what Hospice gains from this but Medicare certainly benefits from a person not lingering. I assume if your Hospice facility shows a good record of not keeping patients around too long that it certainly helps in qualifying for Medicare support.
I think you are on target 100 percent and very much in touch with your own feelings re: the loss of your grandmother, I appreciate your candidness and would suggest to the person who wrote her comments regarding your situation that her experience is not the same for everyone and that it does not mean that it is universal. Also, she may not be aware that usage of morphine shuts down the respiratory system,
Your grandmother sounds like a lovely person and I am sure she was a great loss to your family, You seem to handling the grieving process admirably! I know something about that as I am a social worker. Thank you for speaking out and telling your side of the story!

Btancredi1 answered...

My husband and father are BOTH 94 and both bedridden. (Yes my husband is a lot older than me. He's been the best husband ever. A gift from God). My husband is bedridden with Parkinson's. My father has dementia and is the sweetest, kindest man you'll ever meet. To this day. He's now pretty much skin and bones. But he's alive. My 91 year old mom and I use a "pull sheet" and lift him out of bed and sit him up. He waves at me and smiles and says "HEY!" to get my attention. He's not much interested in food and water BUT he will eat and drink if we give it to him. He coughs a lot at night because for months my mom fed him oatmeal (would make a great wallpaper paste). ANYONE not active would develop lots of phlegm if they ate dairy and wallpaper paste every day. I took my bedridden husband OFF mucous-forming foods and he eats like a horse - salads, fruits, eggs - good foods. There's a LOT of love left in both our guys. I want God to decide when they will go. My husband was on hospice but I let them go. They kept pushing the morphine and telling me my husband had the "rattle" whenever he'd get a little congested. If I'd listened to them, my husband would have been "killed" over a year ago with the morphine. Since then we've enjoyed a lot of time together, and a lot of love with our 7 children. I've given my husband NO morphine. He's NOT in pain. He is alive and now with a home doctor's group. They say he's the healthiest bedridden 94 year old they've ever seen. He looks about 75! God will decide when my sweetheart goes, not a hospice nurse. Now they're telling me to withhold all food and water from my dad. Just last night he sat up in his chair, smiled and waved at me, and fed himself some finger foods. We'll persevere with that, thank you. I love what Hospice was SUPPOSED to be, and HATE what it is. Those who are saying it's a fast track to death are right. Who decided it was okay for them to play God? I can understand morphine for someone suffering and absolutely on their last day or two of life. That's how hospice started. Medicare now pays them $5,000 a month to come bathe my dad 3 mornings a week, and for an RN to call us and tell us to give him the morphine. What happened to TRUE compassion and tender care?

Full-time caregiver answered...

I helped found a non profit hospice society 20 years ago . Our first board quickly became aware of the need to stay independant of the medical system . We used the medical system as needed for those dying friends we cared for . It seems that , in reading these posts, medical people are now controlling the dying process. In Canada physicians will soon have the legal right ... nay, the duty , to euthanize people . This is thanks to Canada's nine member supreme court . Hospice philosophy started.with Jesus..He said "care.for.the dying " But physicians now seem to believe they have some moral right to kill instead of caring.