Are terminal patients given IV hydration in hospice. or are...
Are terminal patients given IV hydration in hospice, or are they left to die with nothing but injections of morphine? I did not see any IV connection in his arm, and he died two days after admittance to Hospice. He had lung cancer.
People may or may not get IV fluids during hospice care for cancer. Although it's important to keep a person reasonably hydrated during this last period of their lives, often terminally ill people find IV's uncomfortable and bothersome. For this reason, many hospice providers prefer to try to hydrate the person orally; even swabbing the mouth with a damp sponge can help keep a dying person comfortable.
Research studies on IV hydration at the end of life have shown mixed results. In some studies, no benefit was found. In others, IV hydration did help reduce delirium and other discomfort.
In the end, the best care plan recognizes that every decision has benefits and burdens. Hospice care plans should be individualized, based on the dying person's preferences and medical situation. Often a little trial and error is also needed, to figure out what keeps the person with cancer most comfortable.
My son had terminal cancer and died at the Hospice House. Right before he died he drank 5 cups of water. That was the only thing that he was able to keep down in over a week. Did not help any but it made him happy and that was all that we cared about at the moment.
One reason we did not force fluids on hospice patients was because as their system was shutting down the need for fluids decreased dramatically. Our policy was to give fluids as desired and to swab mouth frequently for comfort. It is difficult for family members to not feed or hydrate their loved ones and we worked very hard to help them through the process and keep the patient as comfortable as possible.
Human life requires water,if the patient makes the choice not to have an IV,then and only then should fluids be given by mouth.It should never be a policy to administer fluids one way.Every end life patient has his or hers differences in what they want if they are able to communicate,this is one reason why health directives are so important to have before we may become unable to communicate on our own.
sometimes it seems wrong not to give the person a iv. It is a very hard process to watch someone you loved die, my mother was in hospice for 3 long weeks before she died, miss her dearly but mostly hope she forgives.
My mom was on hospice care. They advised me to stop swabbing her mouth during the last 48 hours as this would be harming her. Thus the agony of being unable to do more left it's mark on me. I will carry this until the day I face my own end life.
As a Hospice nurse for 12 years, I am not surprised by the previous answers. Our policy is to do what the patient and/or family want. We do provide education that at the very end of life, as the rest of the body begins to shut down, so do the kidneys. Any fluid intake may increase nausea, vomiting, and diarrhea. It may cause fluid in the tissues which make people more prone to bedsores. It may cause fluid in the lungs which may cause difficulty breathing. It may cause saliva which a dying person cannot swallow so their respirations sound like blowing air through a straw into a glass of water. That is pretty disconcerting to family members. Nature's process of a 'dry' death is usually more comfortable. Dehydration causes endorphins to be released in the brain which produces a natural pain relief and euphoria. IV fluids prevent that natural comforting process. IV fluids do not relieve the experience of a dry mouth as well as gentle moist swabbing does. The dry mouth is what causes most people to feel uncomfortable. It is easily relieved with a sensitive loving touch with a moist swab-unless the patient has a sore mouth or some other reason to not want the swab. Because of our medical culture, however, people think the natural 'dry' death is uncomfortable and we sometimes cannot educate people away from that. In that case, we provide the IV fluids rather than have the loved ones suffer. In EVERY case so far, however, the loved ones see the discomfort that the IVs cause and have us stop them. I am sorry for the expressed dissatisfaction with Hospice. Our team does everything we possibly can for the patient and family to have the best experience possible during such a time as this. We are truly grieved when we have patients/families unhappy with our services. We do our very best to honor the wishes of the patient and loved one whether we agree with those wishes or not. That is what death with dignity is about--having your wishes honored.
My sister recently died in Hospice. It caused me to raise many questions. She was diagnosed with cancer. She refused blood, so her doctor "suggested" Hospice. Her religion (power of attorney) "handled" everything with the doctors. They removed ALL her other medications, even her C-PAP. (Said she wasn't a candidate for treatments.) With the new "Healthcare" Reform to Socialized Medicine "push" (Note the Caduseus "Serpent" Symbol?) - I find Hospice "law" (or lack of) very dangerous, as "legalized Genocide". Why was Jack Kevorkian imprisoned but religious and medical Organizations/Government (Legalized "Drug(gery)" Cartel ) not questioned, and allowed ...?
I don't see how a patient is "comfortable" without fluid or oxygen!
Who devised the Hospice idea and rules? I certainly don't think GOD had any part in it!
I was deeply grateful for Hospice care of my husband in his last days. He had suffered so horribly in the hospital for weeks and at the Hospice Center, I could talk to the doctor and the caring nurses and make sure he did not suffer any more. Only one who has watched a loved one suffer with cancer, hear his cries and moans, can understand how much it means to have help from knowledgeable people in those last days. I asked for the strongest pain medicine possible for my beloved husband of 45 years. I knew he would be unresponsive but I knew he depended on me to do the best for him. That was my final gift to him - a pain free passing with caring people there to help us. Thank God for Hospice and the people who help us through the end of life.
My dad was under the care of Hospice for the last 6 months of his life, he had lung cancer. We were fortunate in being able to have him in our home for the final 3 months, with Hospice staff making regular visits, increasingly so as the end was approaching. My dad kept his oxygen on until moments before his death, though at that point it was doing more for us visually- he was well past the point of it helping him at all. The last week of his life, dad wasn't taking any food, though we did offer him a popsicle, and did good mouthcare, swabbing it, keeping his mouth moist. The gurgling the last few days or so, he was unable to cough and the secretions were laying in the back of his throat, was bad. I questioned the need for suctioning, and was told once we started we'd have to keep doing it, and more frequently so. My family was so impressed with the Hospice team- we already had my mom in the nursing home with dementia, so it was good we had the option of not sending him there as well.
My 94 y.o. mother was in hospice for the last 2 1/2 weeks of her life. She had been refusing to eat or drink most of what she was offered at the hospital after surgery. The 'social worker' was under pressure to discharge her, so began contacting nursing homes -- which was NOT what Mom wanted, and what we knew would only prolong the end -- feeding line, little mobility, repeated bouts of pneumonia, etc. could be expected for the next 6 months. Her doctor agreed that hospice would be the most merciful choice, as she hated being pressured to take meds, eat, drink -- anything by mouth. We found a hospice in Connecticut, not far from where we grew up, and they were wonderful. While they said she might even recover in that atmosphere, they never gave us false hope. The answer from the Anonymous hospice nurse above was even more comprehensive than what we were told, but overall they provided excellent care & support -- for Mom and for us. If I had to die & couldn't be at home, I'd head there.
I lost my sister from stomach cancer in hospice. If her caregivers had been communicative, I would have understood why they stopped hydrating her, but no one ever explained what was happening. Because of this horrible experience, I dislike hospice care. It seemed cruel and uncaring, like they were trying to hurry up her death.
took care of my father at home...stomach and liver cancer...dads doctor ordered LIPIDS via an IV and since I was a nurse, I did his care. Whether it helped or not, ? but he was comfortable when he passed away....and I found it was also comforting for my mother to see this IV as dad completely stopped his intake of fluids.
My mother was under Hospice, and I am so thankful for the care and compassion that they gave my mother and myself, which I was her caregiver. They were there for me whenever I needed anything, My mother had pancreatic cancer and was 85 yrs. old, she never suffered one day under their care, she was at home , I cannot say enough about the care that she received during the last hours of her life. Now we found out in July that my only sister is in stage 4 lung cancer, and we will be under Hospice again.
I'm a Dietitian that has worked in Hospice for the past 9 years who works with patients and their families who are have difficulty with abilitly to eat and drink or with ability to tolerate tube feedings and hydration. There are no clear rules we use in the program and we listen to the patient and family wishes. However, our experience and a growing body of research does show that during extended disease and at the end of life that the body's need for for food and water declines and in most cases it's ability to use or even tolerate nutrition and hydration declines also. It is true that in some cases IV hydration may improve some symptoms such as confusion, but in the majority of cases it contributes to other symptoms such as edema, congestion, nausea, secretions that are aspirated, more frequent urination and bowel movements that require care. All of these can contribute to the patient's discomfort or what is referred to as the "burden" of continued oral intake, tube feedings, or IV hydration. Rarely does our medical team dictate what the patients and their families must do. Instead, we educate and work with them helping them through a difficult time and in making tough choices. IV's can be stopped to see if there is less congestion, tube feeding rates can be reduced, oral feeding and drinking can be limited to when the patient asks, and mouth care can be provided. I continue to be amazed how simple changes can provide such comfort and so quickly. I also understand how difficcult it is to accept that someone is approaching the end of life and try to help them understand that food and water at some point does not help and can hurt. It is the disease process that causes death, not lack of food or water.
When my Mom passed 27 years ago, we did not know about Hospise.We watched her suffer for 36 days. It was horrible to not be able to help or comfort her. My Dad passed 2 1/2 years ago. He had hospise. They were amazing,caring people. We got thru those final days with someone there that walked us thru what to expect and how to make Dad comfortable. As said above,watching a loved one die is not an easy task. Having someone there to stand beside you is a true blessing...
My dad is dieing of lung cancer at home right now. He is on an IV but we really had to fight for it. Without the IV he vomits and can not keep liquids down. He has no edema, fluid on the lungs, or other side effects from the I.V. None the less we get constant pressure from hospice workers to remove the IV because we are told that a dry death is better. I really appreciate everything that hospice is providing but I just can not help and wonder why so much pressure to get rid of the IV when it seems to be helping his quality of life and so far there are no negative side effects. The cynical part of me can not help but wonder if Medicare does not want to pay for a registered nurse to come check on the IV every day which is what needs to happen when you have an IV at home. Without the IV a registered nurse would only come twice a week instead of every day.
I took care of both my father and my mother with the help of hospice. I'm a complete chicken when it comes to anything medical, and would never have made it without hospice.
When the hospice nurse explained how the body starts shutting down towards the end of a terminal illness, I had to put my head down on my knees to keep from fainting.
My mother, however, chose to decline food and water. I had an extremely hard time with her decision. It just seemed wrong to me at every level. However, she asked me to support her, and let her die peacefully at home. So I agreed.
She stopped eating anything at all, and her nausea went away, and her stomach quit hurting. She didn't drink water, although I got a little spray bottle at the drug store and sprayed her mouth and lips frequently. During this time, she did get drops by mouth of a pain killer, so she felt fine. She even went out and planted bulbs for spring, and gardened.
It took 16 days before she died, peacefully in the evening. It was not awful at all, in fact, those last days were very pleasant.
I do think each patient and family should make their own choices, and certainly feel free to change them at anytime should the patient become uncomfortable.
Good luck and hugs to anyone here going through this experience.
Thank you to all who contributed to this discussion. It is so good to know we are not alone, and you have given such helpful insights.
Our elder relative is in the hospital right now in what we have been told is a terminal condition after suffering a major stroke. When we came to visit, we wondered why no I.V. was hooked up. He is obviously thirsty because he touches his mouth with his one working hand. He can not communicate verbally, but did smile and did squeeze our hands.
His quality of life has been declining in recent months, and he may have felt like a burden to his family. Once he and I were talking about anti-aging health supplements like biocritical priora, and he said he wasn't really interested because he was "ready to go". On the other hand, he was playing table tennis just a few days ago!
The family has been preparing, at least mentally, for his imminent passing over the last few years. They threw parties and special ceremonies to make him feel appreciated and much loved. It is difficult to accept the idea that it is now best for him to die as quickly as possible, as in a matter of days.
If I were his primary caregiver, I would give him water, and food and whatever comforts I could provide, and try to make him feel that it is a welcome burden, even a privilege. Still I am not in their shoes, and don't feel I have the right to judge, or tell his immediate family members what to do. God bless them in this difficult time.
My mother was on hospice and we fired them. She had scabies almost the whole time they were involved with her care at the nuresing home ,over half a year. Comfort care ??????
I'm undecided about IV hydration for a hospice patient. My mother just passed away on Nov. 19, 2012 in hospice care. We we told that their policy was not to give IV hydration, as that prolonged the process and added to the patient's discomfort. With this approach we were told that patients typically passed within 3-5 days. Hmmm.... We were also told that if the patient requested food or water that they would not be denied. We bought in to the approach - what did we know? Trouble is, with significant amounts of pain meds the patient is so drugged-up and sleepy, they have no desire or ability to eat, drink, or communicate. Mom entered hospice urgently via the ER, as her condition deteriorated rapidly and sooner than expected. My father was very distressed that she did not have hydration - thinking it inhumane. I'm not sure he was wrong. Mom was not comfortable in any sense of that word. Yes, we swabbed her mouth and applied moisturizing ointment. Though she didn't have edema, her breathing was horrendous, labored to the extreme, and eventually hampered further by secretions too deep in her throat to suction effectively. She also had a very high fever which caused her considerable discomfort - unrelieved by Tylenol & aspirin. Would hydration have offered some relief? It seems reasonable to think so, but the hospice doctor was no where to be found for a full three days! The nursing staff was supposed to be hospice trained, but only 1 nurse actually was a hospice nurse in this small town hospital with 4 hospice beds. The real hospice nurse was an angel - just knowing how to position my mother in bed provided instant and noticeable relief of her labored breathing - she was clearly more comfortable. That is, until the regular nursing staff changed shifts - they made a mess of things, and only entered the hospice room when a family member reminded them that it was time for meds, or requested their attention for some other matter - the fever, my mother's drenched clothing and sheets which made her shiver uncontrollably, or her increased nausea or pain. After witnessing her decline over 4 days, she passed within the estimated time frame. We were assured that the fever/chills, and the awful gurgling noises from the secretions in my mother's throat sounded worse than they felt. Really? I don't know about you, but when I've had the flu/respiratory infection the fever makes my whole body ache, the chills make my whole body tremble, impossilbe to get warm, and the excess phlegm in my throat makes me choke and makes it difficult to breathe. All very uncomfortable. Where do they get this stuff? How do they know these symptoms are not uncomfortable? Have the doc's and nurses experienced the dying process and come back to make a report? That said, my mother could not have remained at home as she wanted - her condition could not be managed properly or safely at home. It's not always easy or peaceful to die at home - for the patient or the caregivers. I have to wonder if some administrator sitting at a desk crunching numbers thinks it's best to have the no hydration policy because it's more expedient, requires less nursing care, and therefore, more cost effective for the facility. I've heard of positive hospice stories, but I would caution that not all hospice's are created equal. Mom suffered greatly at home. It seems that she suffered less in hospice, but she was definitely NOT comfortable. If there's time, do your homework, ask questions, visit the facility, and make sure that ALL of the nurses are hospice trained, and that there is a doctor available to make necessary changes in meds. God bless my poor little broken mommy, and God bless your loved ones, too.
I'm sorry for the loss of your mom. It sounds like it was very hard for you and your father to witness. Sometimes I think it is more difficult for the family than the patient.
As I mentioned above, I took care of my mother at home, with the aid of hospice, and my mother did not look comfortable at all. But luckily she was conscious the whole 16 days that she refused food or hydration, and I asked her constantly, and she always stated that she felt fine, up to the last hour she was alive. Then she slipped into sleep and stopped breathing. Of course, she was on a prescribed medication, some kind of morphine that I gave her by drips in her mouth. So that may have been what kept her feeling comfortable, even though by outward appearance it seemed to me that she wasn't.
You did the best that you knew for your mom. That's all most of us can do. I hope you will have peace about it.
Hospice care has done wonders for our family, they are here for the dying patient and the family. They are here for comfort and pain controll, and support. they follow all the wishes of patient and family. I am typing this now as my mother in law lays dying in her bed under hospice care, she has stage for lung cancer, Hospice has helped us so much but if a dying patient has wishes hospice respects them and that is the most important thing. I feel for everyone who has had a bad experience but wishes must be respected. jack kavorkin injected dying people with a drug to stop their hearts at the patients request ( that should have respected), try watching a person who cant tell you were they hurt, they cant talk, they dont eat or drink, moans everytime they are moved or breath- its horriable. you are so helpless, you just want the pain they are in to go away, thats what hospice does- the control the pain and comfort. I wish they could do what jack kavorkin did so loved ones didnt have to go thru this. As long as its their wish I see nothing wrong with it- do you think your loved one wants you to see them like this? do you think they want to feel that ? nobody would want someone to go thru this. thank you hospice of west michigan you guys have been great and we cannot thank you enough for what you have done. god bless you all
I'm not sure when you wrote your comment about who comes up with the hospice rules. Hospice has undergone lots of changes (and also some marketing techniques) during the past years. There are some hospices who remain true to the original mission, but you have to be careful.
You could check out the federal government pfd file - gpo.gov - dated June 5, 2008 - conditions and rules that hospices must meet in order to get the Medicare and Medicaid federal dollars. They oversee the hospice industry (which is where hospices get a big chunk of their $$ - along with private donations.)
To give you an idea of the true mission of hospice please check out hospicepatients.org -- they have a wonderful website.
"The Constitution of our nation is firmly based upon respect for the sanctity of life, the liberty to live in freedom until a natural death occurs in its own timing." -- quote from Ron Panzer, Founder, Hospice Patients Alliance
My mother had lung cancer and was on hospice care living at home. She was admitted into the hospital part of hospice when she had uncontrollable bowel movements due to too much morphine at home .( Still a lose dose though). Doctors controlled her bowel movements which went back to normal one day later in the hospital. They then started adminstering much more powerful doses of morphine that she didnt need. Because she was not awake much of the time because of the morphine she stopped eating and drinking. I couldnt understand why they had given her a higher dose at hospital when she was fine with lower dose at home. She died 6 days later at hospital because she was not conscious enough to take in any nutrients. When she was briefly awake the nurse said dont feed her because you are feeding the cancer. She also was able to drink water and had no fluid on lungs . Her husband didnt want to give her water either. Between the negligence from hospice and her husband Im not sure whos worse.
My father had stage 4 pancreatic cancer and then he had a stroke. The stroke left him where he could not eat or drink. He was on a IV drip in the hospital and then they kicked him out after about 3 days. My mother sent him to hospice. They took out his IV and he was left to starve and die not from the cancer but from starvation. Yes, it is just another name for assisted suicide. I hope this helps others see hospice for what it is! Cheep and it kills fast. It has nothing to do with dying pain free... come on it is all about money and getting them to die quickly, so that the bed can get another body in it! So sad, that America is so screwed up that people actually fall for this
People died for thousands of years without artificial nutrition/hydration. Just in the last 60-70 years have we felt the need to put in IVs and tubes into the stomach to prolong what can be an agonizing process. The natural process can be so much more peaceful and comfortable. Each hospice, each physician, nurse, aide, chaplain, social worker is different. Hard to generalize effectively. One thing certain is death, no matter how hard we fight it, no matter how many tests, xrays, surgeries, drugs, we are still going to die. We can be tested, drugged, cut upon, etc. to the bitter end--to the point we can no longer even make our own decisions; or we can choose to die with dignity when we still can, before others are put in the position of feeling it necessary to prolong our agony at all costs. We can win awards for "fighting the good fight", but, really, is it worth it? Really seems kind of crazy.
I was shocked today when I asked why my grandmother was not receiving any fluids, and the answer is, because that's not provided for terminal patients. Yea, and you all said she would of died 3 days ago, and she is still living, and no, DNR does not meet withhold fluids. How ever you look at this, this is starvation, this is euthanasia, which at last check is illegal.
Then they keep you doped up with Morphine every 2 hours, how can the patient take in food or water. Grant it, my grandmother is 100 years old, and until recently has been pretty dang healthy for 100. When we give her water, through a straw, in her mouth, she drinks, but I also know she is not getting the other nutrients that she would get from IV, such as potassium, ect.
Many years ago, when my grandfather was in Hospice, he was provide w/food, water, and when necessary, IV. I am sorry, but allowing a patient to dehydrate, hell we give our pets better care than that!
I'm so sorry, cheropride. I think it is very important that the patient, and then family's wishes be respected. As I noted in a post above, my mother stayed at home while she was dying. It was her choice not to take in food or water.
When she told the hospice nurse that, I was shocked and almost fainted. However the nurse explained to us that as the body starts shutting down from a terminal illness, organs naturally start failing. To give food and water sometimes prolongs the process.
My mother did have morphine for the last 6 months of her life and she was able to eat and drink without any problems. However, when she started having stomach cramps and nausea, she elected to decline food and hydration. I supported her decision, though did have spray bottles of water to keep her mouth and lips moist so that she was comfortable.
She continued being able to walk outside and work in her garden until the day before she died. She was was conscious until 2 hours before she died, and voiced that she was very comfortable. Then she fell asleep, her breaths became slower and slower, and she stopped breathing. She didn't struggle or have that death rattle they talk about and part of that was because she had no fluids.
I have it in writing that I want a DNR or food or hydration when I'm terminal. I witnessed that it is a good death. However I do agree with you 100% that food and hydration should not be withdrawn unless the patient and requests it.
Stay strong. It sounds like your care greatly about your grandmother.
Hospice is one of the worst incompetent organizations I have ever experienced. Heard from nurses. " Dont feed her because you are feeding the cancer". Dont give her water for no reason. She craved the water when I put it to her mouth. I specifically asked if she could swallow and they said yes. My mother went in to to hospice to stop uncontrollable bowel movements brought on by small minimal amounts of morphine.Then then gave her too much morphine that she didnt need and that stopped her from asking for water or food because she was sleeping most of the time. She died of a heart attack because of dehydration and lack of food. I would advice anyone bringing their loved one in to watch everything that is done and express discontent. What a negligent organization. I hope no one has to go through what i went through
As a hospice nurse, I spend much of my time educating and support the family members and people concerned for the dying individual. Each and every case is unique; what works in one, may not work in another. There is no "cookbook" or one good recipe...each case needs to be assessed and handled uniquely. For my father who died from lung cancer, it was the chemotherapy and radiation therapy that killed him, in my opinion. He was sick and vomiting most of the time. Once we got him on hospice and a pump that put a very small dose of morphine into his system with the option of adding more if needed, he did much better. But he was so emaciated from the treatments before, he just couldn't hang on. I think the pharmaceutical companies with their promises of a cure are the real culprits in this debate. They feed on our need to live forever---death is just part of the whole life cycle...we should embrace the opportunity to be close with our loved one and share in their moment of enlightenment, rather than run from it. So many of the patient's I cared for struggled more with the side effects of the medications and treatments, including IV hydration, than ever had a peaceful death. I think it depends on the terminal illness and body system affected, the person's whole approach to the process of dying and the family's understanding of their loved one's wishes that govern the decision. Personally, I believe in guided suicide should the person decide the fight's just not worth it anymore. But that's just me...
Beware of hospice in a nursing home situation. My mother is in such a situation. We have slowly realized that hospice has no real authority at the nursing home and provides almost no real service to our mother who is still being urged to take water by mouth, though she gags with every attempt to swallow (sucking on a sponge has been more successful). She has received no nutrition, other than sherbert or popsicle for a month, but this seems to be prolonging her suffering. The nursing home has been reluctant to administer comfort meds. The doctor has given "as needed" instructions to the RNs but they are reluctant to give the meds unless my mother is clear that she is in PHYSICAL pain. I believe she is actually starving to death and is quite uncomfortable after having a massive stroke that prevents her from eating, speaking, moving and has clearly affected her ability to swallow. I am now trying to move my mother to a residential hospice facility in hopes they will be more generous with comfort meds. I will be consulting Compassion and Choices in the hope they can recommend a good facility, though I'm told the only one in the area is affiliated with the Catholic church. I'm concerned because the church has taken a very firm position on maintaining life under any circumstances, even in a persistent vegetative state.
My father had in home hospice for my Mother who was dying of cancer. Her request was never take away her fluids. She was confused the day I was called to the house and calmed down after I was there. I was told she needed to take a pill to calm her down well it didn't go down the first try but she did get it down and also was very thirsty and drank a half of a can of soda. She could not get it herself which means my father never offered her any fluids from the morning I was there. I was shocked when the hospice nurse said my Mother could no longer swallow. Come on she just drank a half a can of soda! I was horrified when the hospice nurse said a patient is expected to die shortly and they can get her in tonight. I felt like I was going to puke. It was all so cold. After they gave her these med's to calm her down she slept O left because there was no way I was going to watch her be taken to hospice when she was promised she would die at home. I went to hospice the next day to see her and she was laying in a bed overly medicated but she said my name. I asked my father why she didn't have an IV and he told me my Mother was not there to drink and eat she was there to die. How cruel was that to just rush her death? She died exactly 7 days after she went in from dehydration. Hospice is a place to die and as someone posted you see this guy behind the desk figuring out when the next one will come in. My father will have to answer for that some day. He broke every request my Mother had and hospice pushed so hard to get her in there. I personally think withholding fluids is cruel and hospice never even swabbed her mouth or moistened her lips. I could tell she was so dry. I had no say so about anything. God will take care of it some day that is the only thing that gives me peace. To me Hospice=Die in 7 days
HOSPICE Care is Nothing More than Legal Euthanization...Period! My Mom was put in Hospice against her wishes by my Father who was too tired to take proper care of her. She had COPD, but was living a healthy life. Her wishes were to die peacefully at home when the time comes. Dad was exhausted and thought HOSPICE would help her more than he could. He did not know that HOSPICE is NOT a Hospital to help patients recover. The staff at Hospice don't care if the patients Eat or Drink and they refuse to give IV fluids, with the excuse that fluids "MAY" build up in the lungs and they really don't like changing a sick patients diaper anyways. They pump the patients full of Morphine to put them into a coma so they can dehydrate in a Morphine induced Coma so that passing away is quick and easy. I watched my MOM pass away in this manner recently. It was horrible to watch!!! We did not know what HOSPICE care was at the time and I was totally disgusted with the way they operate. Our bodies are made up mostly of water and require fluids to function properly. Why anyone would refuse to give a person fluids is unbelievable. Our bodies automatically know what to do with fluids. It is a necessity for life. A person will die in a matter of days without water or fluids. It takes much longer than that if they have water, but no food. My mother wanted Food & she wanted Water... I gave her as much as she wanted and she was coherant and talking. When I returned to see her the next day, she strangely had gone into a coma and I am sure it was due to the overdosing of morphine. Hospice refused feeding or IV or any treatment that a normal hospital would give. I just read that Hospice makes more profit from patients that die quickly because they have less expenses. They are paid a flat fee for patients in hospice... for care up to (6) Six months. If the patient dies sooner, they make more money as profit. It's disgusting. I would never suggest Hospice for anyone that is sick no matter how long the Doctors think they May or May Not have to live. Doctors really don't know for sure how long anyone has to live. A regular hospital or Emergency Room will at least do their best to SAVE and Prevent a patient from dying. Think about how many patients actually "Recover" in a good Hospital and go home and live longer healthier lives. I know for a fact that Morphine causes constipation and prevents the body from functioning properly. I've been in a Hospital due to a Heart attack and was given Morphine... I told them I did not want any more pain medication and my body started functioning properly and was able to go home after I had bowel movements. I recovered quite well. I have 2 Stents implanted and am on blood thinner medications to prevent another Heart attack and I am doing great. Who gave HOSPICE the right to decide what is best for a patient. It's all about money & profits. It was Horrible watching my Mother pass away in a Hospice facility... It was so strange that the place was completely full of patients when I first went to visit her, but within a week or so, All of the patients were gone... strangely had ALL passed away over a 3 day period of time after she went into that coma. I should have requested an autopsey, but we were all distraught over her quick and unexpected passing away that none of the family members even thought about requesting it... We had to arrange a funeral and we were thinking that the Doctors at HOSPICE would say that it was just her time to go and she died naturally. It is NOT natural to die in a Morphine induced coma and dehydration. It's as bad as dropping someone off in the middle of a desert with no food and water and waiting for them to pass away and then calling it a Natural Death. The patients are so drugged up that they can not speak, move or even call for HELP. If you have any love for anyone at all... Take them to the emergency room at a nearby Hospital and at least let them have a fighting chance to live. A friend of mine said one of her friends sued HOSPICE and won a HUGE settlement after her mother passed away in one. The autopsey showed the cause of death was an overdose... "Morphine Induced Coma" which led to her early death. HOSPICE is playing GOD for a fee. Unsuspecting patients & their families have no clue. My Mother is now resting in Peace and I refuse to have her body disturbed or Exhumed to find out the cause of death... It's now too late.. May God Bless her Soul.
My sister was just admitted to hospice and still has a feeding tube. As of the past two days she has not received any fluids. She had a stroke four months ago with surgery following (which she never recovered). I am concerned that hospice is starving her to death.
I'm sorry to hear that. Have you talked to the hospice workers and told them your concerns? You need to do that for your peace of mind.
I first want to send a wish of love and peace to everyone reading and contributing here. This is the hard part of life, and this discussion helps many people - you are giving back in many more ways than you realize by participating here.
I have house pets that I dearly love - three cats and a dog. For me, my barometer for my pets as far as deciding when their health has declined to the point where the quantity of their life has exceeded the quality of their life, has been to observe the degree to which they were able to enjoy their usual activities free from pain, and whether they were eating and drinking. And honestly, I hope that when it is my time to leave this world, I hope that someone uses that same standard to help ease my passage from this world into the next. Ideally, I'd like to set out on my own, with a bottle of whisky and a strong sedative, for a long walk into a chilly woods for that final sleep when my click has run out. I would far prefer to pass in that manner than to go as a nameless, faceless burden, shivering and alone, with only strangers to attend me. No one deserves to go that way.
My Dad in 1997 of colon and liver cancer and we had hospice. My sister and I were young (23 & 25) and were Dad's only caretakers. Hospice was recommended and we took Dad to the Hospice Home. It was the best thing we could have done for him. The nurses were wonderful, caring and things were explained everything to us clearly, but kindly. To this day, both my sister and I have the utmost respect for hospice people. To work with dying patients every day takes a very special person. We chose to have an IV for my Dad for fluids and his meds (morophine). He was in an almost comatose state and was not able to eat or drink, so aspiration was not a problem. He died very comfortably. I think as several people have mentioned here, that the fluid thing is a very individualized choice for your family memeber. I also think that you should listen to what the hospice people tell you, as they are the professional staff. They will be respectful and helpful to you. You must admit, they aren't dealing with dying people for the fun of it, they've chosen to do this because they have a passion for helping people.
Dear anonymous......It does sound like you had a good experience for your Dad with hospice. That is wonderful. Evidently you had caring/respectful staff.
Your Dad died in 1997 - 17 years ago. At that time many people had not heard about hospice. The mission of hospice has changed through the years. They will deny it of course but many hospices have veered off the good path....especially since Medicare pays for it for the most part.
To my knowledge no one gets an IV for hydration now. That would be considered a "medical procedure". That is what some of us are pointing out......that most hospices now-a-days WITHDRAW just REGULAR hydration/feeding (not even an IV).
I have dealt with many hospice people. In my experience their main concern is not to respect the family/patient (although that is how they market themselves). Sure ......there are good staff members who truly care, but many of us know there are little Kevorkian nurses and doctors running around in the facilities (and even in the homes they come to). This is all done in the name of "comfort".
Remember......The NHPCO (National Hospice Palliative Care Organization) has its roots in the EUTHANASIA movement. They have just renamed themselves through the years so they are accepted in the mainstream
According to research I have found on the internet.... Google, etc... "After 3 Days without fluids,... Without Water/Hydration,... The Human Body will Perish." .. It may take 6 - 10 Days for some individuals to die. Air & Water are a necessity for Life. A person can live up to 2 week without food, but must have Water to survive. My Mother would NEVER have chosen to end her own life by Starvation or Dehydration and she disiked drugs & alcahol. She said she did not want to be in HOSPICE, but they kept pumping her full of Morphine and she could no longer communicate. I am cnvinced that HOSPICE caused her death, not COPD. I never saw her having breathing difficulties. They removed the IV that I had requested, then caused her COMA and dehydrated her to Death.
I'm sorry for the experience you had with your mother.
As I wrote earlier here, I was the sole caretaker for my mother the last 6 months until she died in her home. Hospice was a Godsend, and I couldn't have done it without them.
My mother made the choice to decline hydration or food. It was extremely shocking to me at first until the hospice nurse explained how the body organs shut down close to death.
I did buy a squirt bottle for when her mouth was dry and gave her good oral care with wipes and lip balm to keep her comfortable. She died 16 days after she stopped drinking fluids. However, she was completely comfortable and without any pain the whole time. She even planted tulips the day before she died.
What bothers me is the difference between a patient or family's wish to decline hydration and the practice of "terminal sedation." In the latter case, the patient is kept semi conscious from morphine, and does not ask for water. The family may, or may not know it's being done. It's important to me that hospice or a medical person fully inform the family and respect their choices.
And this is why people should have a choice to end there life instead of all the suffering. I have watch my father die of cancer also my mother currently is dying from brain cancer, no one should live like this at all. Heartbreaking stuff and it messes with your head. As my dad would always say " if I were a horse you'd shoot me, because I'm human I have to suffer" amen dad, amen.
I don't believe God has anything to do with hospice. You can put whatever spin you want on it---they expedite death. You can call it "prolonging the outcome" if you don't want to use the word, but it's still the same. Not saying some don't get really good care, but the purpose is the same--hurry up and die. A friend of mine was encouraged to get hospice because of her cancer even though she was still holding down a job and doing it well. Jumping the gun a bit ya think? This is my opinion only.
To the point that a hospice makes more money if patients die sooner:This is not the case. Medicare reimburses per day on service. There is no actual time limit, the patient just needs to show decline in condition to remain on the service. Per Medicare guidelines, patients are reviewed for recertification on a regular basis to ensure they are still appropriate for hospice care. Legal decision makers (often family)/powers of attorney/patients if able are the ones who give consent for this service and have a responsibility to participate in the care. Hospice staff needs to educate patients and caregivers on what is or is not beneficial. It sounds like a lack of teaching is the cause for much of the distress I'm reading here. Not all hospices are the same, and you DO have a choice. If you feel the care isn't meeting your expectation, find another hospice. There are many.
So...If the patient shows improvement they are off the program. There is no incentive for hospice unless the patient shows decline. No incentive to help the patient get better. Just keep feeding them morphine until they are unable to communicate or feed themselves. That is totally disgusting.
I think you misunderstand hospice service. The patient(or legal decision maker) chooses to be on hospice--it is not up to hospice or medical provider. The patient can leave at any time. Hospice is for people who no longer want or have the option of aggressive treatment (for example, when the doctors say "there is nothing more we can do", usually followed by a hospital discharge whether the patient wants it or not). Medicare sets the guidelines since they are generally the payer and need to ensure the benefit is used for people who are actually terminally ill. Hospice (a medicare part A benefit) is focused care for terminally ill people who want good symptom management even though a cure isn't possible. No one is forced into hospice--informed consent ALWAYS has to be signed and there is no obligation at any point. People have the right to revoke service and often do. Families/patients (whoever is the legal decision maker) also have the right to refuse anything (morphine etc) and often do. Hospice often discharges patients who do better than expected---and can get into a lot of trouble with medicare if they don't (huge fines, be shut down). Hospice provides care in many settings and is tailored for the individual's goals. If someone wants to pursue treatment or believes their condition can improve, they are more than welcome to do so. All this involves is to request to leave hospice. If you have concerns regarding medications etc and are on/or have a loved one on hospice, I urge you to speak your mind. You have rights and deserve to understand fully what is happening and what your options are.
I would also like to add that hospice exists for comfort care, not the treatment of disease. It exists because even when a disease cannot be cured, and someone is nearing the end of their life, there still is so much that can be done to improve the quality of each day, regardless of how few days are left.
Whatever treatment modality you engage for a loved one - or for yourself - it is important to remain an active, educated consumer - and to advocate for ANYTHING that you believe is in the best interests of your loved one, provided that it is in accordance with their stated desires. This is why a durable healthcare power of attorney, and a living will, are essential documents that every adult person should have prepared - and reviewed periodically. That is the best and most appropriate way to ensure that the care given and measures taken are in accordance with a person's wishes.
My sincere sympathies to everyone posting who has lost a loved one - and my hearty thanks to skilled hospice providers everywhere, for being our death doulas, and helping us to make the transition from this life to the next. You are truly angels of mercy. Not every healthcare provider could handle all of their patients dying.
Re:the above comment> Thank you for your comment.
My 92 y/o Grandmother (whom I was primary caretaker for the past 12 years, although she was living independently, I took her to all her dr appointments and spent many days a week with her) was under Hospice care for the last two months of her life. After a fall and TBI, My Aunt refused to let her go into a nursing home and decided to move in with her (more like move in ON her) to "take care" of her. She cleaned out her house, her bank accounts, all the way down to nothing but an empty home now in foreclosure. Once she had everything she wanted (3 mo later) she discontinued the feeding tube, doped her up on narcotics and put her in a coma. She died two days later. Just three days after we (my gma and I) were laughing and singing and joking away. She couldn't walk or eat on her own, but she could sit up, she could laugh, she could remember everything and interact and most importantly- she was happy. She could kiss me and tell me she loved me. We (my family) questioned hospice about the tube and they told us "your aunt has Power of attorney...we are just waiting for the copy to arrive". We'll guess what...there was no POA, no copy coming, which makes you, Hospice, an accessory to murder.
We are just in the process of admitting my dear friend (54 yo) to Hospice due to renal cancer that has metastasized. She has no siblings or family other than her husband aroud so I will be with them as much as possible. He was vehement that he wanted to "option"of hydration so they will add a PICC line today. Nothing can stay in her stomach because of the gastric tube they've placed because of her bowel obstructions. We will have all sorts of hard candies next to the bed and of course the swabs to keep her comfortable. She can even drink her favorite Diet Coke with lime if she wants as it just goes directly out of th tube but at least she can get the flavor. I worry that we won't know when to discontinue the hydration but the notes above have given me ideas that I hope help. We are trying to find the line between comfort and extending her life becuase we don't want to let her go. Wish us luck!
My father is dying from cancer at the moment at home under the care of hospice in San Antonio. He was adamant that he go home from the hospital so that he could dye in peace. He was angry that it took so long but he agreed to wait until I was able to fly in.
Once the transfer process started, unfortunately the communication between the admitting hospice nurse at the hospital and the hospice nurse, who arrived 5 hours later, broke down. My father went without meds all during that time and it was horrific to watch him suffer.
They also screwed up at Methodist Stone Oak Hospital 4 days prior to that. The nurse missed the new med orders and when my family tried to get the nurse to do something, she was argumentative, unhelpful and arrogant. The miserable nurse was transferred off the floor but the damage was done.
My suggestion to anybody that goes through this is to be vocal and communicate until you get the help you need. Sometimes it's honest over site, sometimes it incompetence, to us, it doesn't really matter. Our father was suffering. Excuses after the fact hardly help.
When transferring from the hospital to your home, make sure that you talk to the nurse and get confirmation that they will arrive at a reasonable time and get confirmation from the doctor that your family member has enough meds to get through a stretch and then a little more in case the nurse is held up for some reason.
Best of luck to all who are reading this and going through the same thing. We've had great caregivers through this process and we truly appreciate them and the great care they have provided my father.
My Father has Throat cancer and is in hospice and they have him on morphine drip and he is so medicated. I ask if they feed him he has a g tube, they said no it will set in his stomach, I ask if he drinks no he would choke cause he is medicated. This to me they are killing him not the cancer. No test they don't know if he could beat this GOD is still in charge and still doing Miracle. I think its a new thing to prey on family member and collect money cause they had to empty the hospital beds find another place with is called Hospice. If someone else tell me my father is comfortable I will scream that is not comfortable being medicated some much he can open his eyes with out them being glossy. They say he has a week he has been in there a week and they will not lower the medication so he could drink. My Father has passed away September 26, 2014
Dear telling the truth,
Is this what your Dad desires for his last days? Is he in pain from his throat cancer? Please use your own good judgment in this. They probably have him so medicated that he can't communicate with you.
If he is not in great pain ask that they reduce or even take him off the morphine....it may not be necessary at all. Hospice loves to put people into a sedation and with all the drugs a person may die faster.....double effect they say. BUT most of the time all those drugs are not needed.
They are great at saying they just want people to be "comfortable". How do they know this? A person might be a lot of other things but probably can't communicate. They determine and assess this from their scale of pain....if a person is fidgety, or blinks their eyes they say "more medication". I have found on numerous occasions that the person (a nurse, doctor, etc.) can wrongly assess pain. You can get a little Kevorkian nurse who makes that call. Not always good.
If you are his medical power of attorney please do something about this. Yes, a person's final breath is in God's timing....not hospices'.
I think I have mixed feelings on this subject. 3 Years ago in Janurary we lost my brother in law to Melenoma and he died at home in hospice care per his wishes and he actually refused to eat and once hospice became involved he passed away 12 hours later. Now as I am typing this my uncle is in ICU and has been there for a week and is dying and 2 days ago he was not expected to make it but he is still hanging on for whatever reason and I can't help but think it might be the IV fluids are delaying the inevidible? He is only hooked up to IV's and nothing else and it has been a few days now since he has eaten so maybe it is just a matter of time. They have him medicated and he is comfortable. Don't get me wrong I don't think that starving to death is the answer and maybe the family could try swabing the mouth instead. They do not want him on life support or to try and pro long his life, it is just the hardest thing to watch your loved one die and to feel helpless and the waiting is the worst,
My mother recently went into hospice, with care being given to her at home, but with a few days in the in-house hospice unit at the hospital.
It seems like the hospice personnel are putting all their focus on my mom's urine (or lack thereof), yet the answer is, "we don't usually do that," when we ask why she's not getting IV fluids there when she gets them at least several times per week at home.
If IV fluids (1) make my mom more comfortable now, (2) don't cause her to vomit, etc., and (3) don't (God forbid) extend her life at all, what is the problem with IV fluids? It seems a much wiser solution than hounding her all day and night to urinate, eat and drink.
I'm sorry to hear you're going through this, Orsina. Hugs to you.
I think the most important thing you can do, for your mother, and also for you, is to be very proactive in her care. Feel free to question and insist on explanations from the hospice personnel.
You have the right to be certain that they are giving her the kind of care she would wish, and to know that she is as comfortable as she can be.
I lost my mother 3 years ago (story above ^^) after caring for her in her home for 10 months. The last 2 months with Hospice was wonderful in our case. My mother chose not to have food or fluids in her last days. When we discussed it with the hospice nurse, I almost fainted. However, she explained to us how the body works when it is dying. Usually organs start shutting down, one after another. In my mother's case, she was starting to experience nausea, vomiting and stomach cramps, with a low output of urine and bowel movements.
My mom refused food or water for the last 16 days, though I did have a spray bottle of water whenever her mouth felt dry. She died on day 16. I know it sounds awful, but she was lucid, happy, and in no pain or discomfort at all. In fact, the day she died, my sister and I were out in her yard with her while she planted tulip bulbs for spring.
My sister and her daughter went home, and mom died while we were watching "House Hunters" which was a favorite show. She just fell asleep, her breathing slowed, and then stopped.
I hope you will be strong and voice wishes for your mom's comfort. Whatever the outcome, you'll be glad you did.
I am happy that I have found this forum.
I have struggled with this issue for the past three months when my 88 year old Mom passed away at a Hospice where my Father had died seven years earlier. While I had stood with my Mom for many days during my Father's final days, I must say that I did not know that Hospice would deny fluids or food to my Mother even when she was asking for the same. As I had been the primary caretaker for her for the past six months, I was aghast and very upset. The fact that I was criticized by the Charge Nurse when I acquiesced to my Mom's verbal request ("Honey, could you find me something to nibble on?" and "Honey, do you think you could get me a Coke?") and gave her fluids, ice cream, apple sauce, pudding, and the like. I was so angry that I considered all sorts of options which including pulling my Mom out of there immediately and having her admitted to the local hospital. If I had been less of a gentleman and a Christian, I may have been very aggressive verbally to this nurse and others who treated my concerns with what I see now as a lack of sensitivity.
I am a trial lawyer and have been for over thirty years and I consider myself an educated man. I realize that the Alzheimer's Disease was taking my Mom's life, but I could not then and cannot know understand why my Mom had to basically choke to death notwithstanding my round-the-clock efforts to swab her mouth and to give her fluids and food until she was basically unable to swallow without difficulty. Mom was at Hospice for two weeks and they stopped giving her food and fluids about three days into her visit when she was still conscious, speaking, and not in any obvious pain.
I would never, ever be involved with anything like this again. There were of course some very decent and kind human beings at this Hospice and they will always be viewed as angels by me. That being said, for some stranger wearing a white uniform to insist as Nurse Ratchett that I deny my dying Mother a simple cup of water when she was asking for the same, raises a level of anger in my soul that I hope will subside with time. I suspect that I will be tortured with these bad memories for a long, long time. I know my Mom forgives me and she died peacefully, holding my hand. I can't write any more as I just am so upset about all of this. I do want to thank this forum for allowing me to not only express my feelings but to see that there are many others that feel the same way. I was made to feel by the nursing staff that I was being unreasonable and a detriment to my Mom's peaceful end.
God bless all those who are placed in a similar position.
Kjudson, WOW, you voice my sentiments. I am truly SO very sorry for your experience. Thanks for writing. I could write a whole page on what you have just written. We have some of the same experiences. My dear Dad died 2 years ago in a hospice facility. Actually he was there just on a very short term "respite" and we were PROMISED by hospice that NO drugs would be given him as he was NEVER in pain. We found out that within 1/2 hour of dropping him off they started him on a regiment of 5 different sedating drugs, gave him a foley and put him on NPO (he was eating and drinking when he arrived..!). He did NOT have a chance. You do not write about medications given so perhaps that was not the case. Yes, we should do something about this. Had we to do it over again we would have called 911 and had him taken to the hospital and given a blood test for drug overdose.
We tried out hardest to bring a case against the nurses, the doctor and the facility but no one will take a case when it is against any hospice, a sacred cow in the health care industry.. The big problem is that it is understood that the patient is in hospice and they "are dying anyway." That is what we were told by the hospice nurses -- "When you bring him to hospice you give him permission to die."
This is for a dear man who expected to be picked up in a few days and who was hungry and thirsty and sitting in a chair conversing when we left...!!
I suggest checking out the website HospicePatients.org for more information. Ron Panzer is a nurse who has worked in the hospice field for many years. His website is a wealth of information regarding what is going on. It really opened our eyes!! He writes about "Stealth Euthanasia" going on in the marketed industry of hospice.
I understand the guilt. My Mom and I live with it daily. My Dad knew we loved him. Your Mom knew you loved her also as you were there with her.
I had a very bad experience with hospice care with my Mom. She had been diagnosed with a brain tumor and was certainly not going to get better, but I feel her death was hastened by hospice, and that they were dishonest. She was having symptoms that were possibly due to side effects from medication, but had been living with my husband and I for a year. We were convinced by the hospice nurse who had been making weekly visits that a brief stay in the hospice house would be helpful to her for symptom management. I agreed, and they immediately sedated her. When we arrived at the facility they continued the sedation and she basically never woke up. When I asked them to back off the medication to allow her to wake up, they told me the medication wasn't making her sleep, but reluctantly agreed. When I arrived the next day they said they had to resume medicating her because she tried to get out of bed to go to the bathroom. They couldn't seem to get their stories straight - was the medication sedating her or not?? Still no symptom management, and when I was finally able to speak to a nurse, she explained she had no idea why the house call nurses told people that they would do any treatments.... did I mention these people all worked for the same company? Since I was questioning their protocol, I was taken aside and told that perhaps I wanted to have them send my Mom home, since insurance wouldn't be able to continue paying for her there. They basically threatened me with sending my now comatose mother home, and I would have to figure out how to care for her. I never would have sent her there had I known their plan to medicate her to death. What a business this has become. Completely disillusioned. I will never make this mistake again. I agree, some people are ready to be done with caring for a sick and dying loved one. I was not, and I feel like I should have been able to make that decision for myself. Never will I sign off to hospice the right to make these decisions again.
Why prolong the inevitable?
People die, we are supposed to die. Trying to keep a dying person alive for your own comfort is insane and inhumane. Watching a person die is hard and distressing. But it's what will happen to us all in the end. (and if a dying person wishes to not have food or fluid intake, who are we to force them?)
I type this right now as my mother lays dying from metastatic brain cancer in hospice care. Day 6 now. No fluids, no feeding tubes, as was her wish. I am thankful for hospice care, so that she's getting the pain meds she needs and the anti-seizure meds to keep her comfortable as she passes.
We have great nurses her at Hospice. Also, unlike most patients, a Hospice patient can have people there 24/7. My mom's greatest fear was dying alone....so we are with her so that she always has someone with her until she passes on.
(and Hospice care is not the same as a nursing home)
It's a bit distressing to read comments that accuse hospice care of being cruel and mean. My Dad was in hospice for two days where he was transferred when he suffered a brain bleed that left him in a vegetive state. Over these two days the staff answered any questions I had, they gave dad excellent, and respectful, care and when it was time for dad to join my mom they made sure we were able to be with him in the way we wished. We would not have been able to do this in a hospital setting. I knew dad would not be receiving hydration or food as he completed this terminal event because someone close to dying doesn't require these things most of the time. He was given pain medication in case there was any chance of him feeling discomfort. Hospice is a place we can go to help our loved ones complete their journey. I've been with two people who went through hospice and both (one in the hospice facility and one at home) were amazingly gentle and kind with hospice staff to help when we had questions. I know I would not have been able to do this without the help of these wonderful and caring individuals. So, if you had an experience with hospice that didn't address your needs ir ideals maybe you should go back and talk to them. And ask questions. They expect you to and welcome the chance to help make this as peaceful as it can be.
My mum had a major stroke on July 7th 2015. We know she wants to die having spoken about what would happen in this situation. One week ago she was taken off her feeding tube having removed it herself on several occasions, even with a bridal attached, this was a clear sign to us that it was her time to leave us. She is now been fed only by a glucose IV and what they call comfort feeding, five small spoons of a yogurt or similar food type. We all hope she's comfortable and wish she'd pass soon. How long do you think she could be like this? It's something she'd not want..
My dad went into the hospital on June 12th with a severe headache. He was diagnosed with bleeding on the brain that eventually went away. During his hospital stay we were told that he had a major stroke. He was sent to hospice after 2 1/2 weeks in the hospital. My dad had no terminal illness, so he should have been sent to a long term facility to help him recover. We were told that medicare would not pay for this. We did not have the money to pay out of pocket, so we were left with my dad having to go to hospice. My dad had an IV and feeding tube in the hospital. We requested these at hospice, but we were told that they only provide comfort care. Dehydrating and starving a patient to death is not confort care to me. My dad was hungry and thirsty. I gave him some baby food and liquids everyday, but my dad could only take so much orally. It was nowhere near enough to sustain him. All requests for IV's fell on deaf ears. There were other patients who had IV's. We were told they were special cases. My dad was not special to them, but he was very special to our family. My dad was 84 so Medicare did not even want to give him a chance to recover. If he had been in his 30's and sufferred a stroke, then he would have been sent to a long term facility and given a chance to recover. We live in a sad society; where the elderly are just viewed as pieces of property that we can get rid of when they become too expensive. I saw my dad improving in hospice. The Monday before he passed, I heard his nurse saying that he was improving. That Wednesday the hospice doctor said that my dads kidneys were failing. Well what do you expect when you are dehydrating him to death. He said if he lasted 4 more days then he would have to be sent to a long term facility, because medicare would not pay for hospice anymore. The system is all backwards. My dad should have been sent to a long term facility first, and been given a chance to make a recovery. Unfortunately, we got the phone call Thursday morning that my dad had died. I know without a doubt that my dad died from kidney failure; due to dehydration. Everyday in hospice his vitals, and breathing were normal. I now live with the guilt that I did not do enough for my dad. I should have demanded an IV, then maybe my dad would have still been here. If not, at least I know he would have died a natural death, and not from being starved and dehydrated to death. Hospice is a death sentence for the elderly; especially if you do not have a terminal illness like in my dad's case. A stroke is not a terminal illness. My dad died about 3 weeks after we were told he had a stroke. Hospice does not provide comfort care like they claim. They just murder non terminally ill patients by dehydration, and starvation. My dad was a Marine who fought in the Korean War, and this is how he had to die.
Being a Palliative Medicine NP, I've read through these stories of hospice and losing a loved one. First off, I'd like to say my condolences are with you all that have lost a loved one. I know how deeply hard it is to watch some one you love pass on. For that, you have my sympathies.
I've been asked a lot "why no IV hydration?" Good question and one I wrestled with in the beginning of my career. Seems cruel, yes. But I like to explain it simply to families.
Imagine you've had a long day at work. You've had no time to eat or drink. You begin to get cranky. You're back hurts. Your nauseous. You get a headache. You're irritated. Your brain feels foggy. You get home and want to eat and sometimes that food hits your stomach, you may get a little nauseous. You drink a cold glass of water and your stomach gets a little upset. Technically, if you've been through this then you've experienced the very beginning of the dehydration process. And yes, it's not pleasant.
If this persisted, and you continued to not eat or drink, you're body releases its own natural endorphins to provide analgesia. Thirst subsides. Hunger subsides. Nausea subsides. Pain subsides. Euphoria begins to aid your body in dealing with the situation. The person sleeps more, breathing slows. Heart rate decreases. It's now more comfortable to be dehydrated. If we reintroduce fluids-the whole process begins again. Pain, nausea, confusion, increase in anxiety. Endorphins subside....natural analgesia is suppressed.
It is not that hospice wants to prolong suffering. Our culture feels eating and drinking is living. And yes, for a healthy, or not terminal person, it sustains life. But for a person that is dying, it hurts them worse. We call it dry death because indeed, without fluids the patient will die. But if we introduce fluids again, we have extended and worsened the death process.
Not all hospices are the same. My advice....ask for references to good hospice associations. Usually the larger, the better as they see more clients, invest more In staff and train them more frequently and have more experience with the dying process. That's not to say smaller organizations don't provide excellent care. Some do....you just have to do some research and listen to good word of mouth.
And again, as stated above, hospice associations are in the business of comfort, not cruelty. If your loved one has qualified for hospice, then there must be a definitive, terminal diagnosis that got them there. Healthy people do not go to hospice. Criteria for hospice services is very strict, not happenstance. 17% of our patients actually are released out of hospice because they improve there. They have more intensive care and therefore, sometimes are released from hospice. That says something about hospice. They did something even we as medical professionals in the life sustaining mind set couldn't do.
Each and every path to ones death is unique. I have read your stories above of family members who appeared to suffer. In all honesty, whether they were on or off hospice, the process may have been the same. If you've ever seen the interventions we do in the hospital to sustain life, it can be cruel and torturous. Machines, drips, invasive procedures...,that is also not a good quality of life. Hospice services goals are to relieve suffering. To help families. They provide pain medicine to keep the family member sedated and pain free. Awareness for the dying person and the body shutting down is cruel. But it's the family members who struggle with seeing their loved sedated that scares them because they want to see mom or dad communicate. In reality, if we pulled away the pain medicine, you would hear worsening confusion and hallucinations, watch them wince in pain. They may not communicate at all other than small gestures as during the dying process, patients withdraw from reality. Hospice nurses provide comfort measures that nurses in hospitals are not trained to do. Truly, it is the best option for someone with a terminal illness that no longer wants aggressive treatment.
I have just begun to think through these issues as I spent a good part of the day assisting my relatively healthy 90 year old mother fill out an Oregon Advance Directives form. The wording of the form was insane and frustrating in the extreme. Constant reference was made to use of feeding tube but not a single mention of any other hydration option. It was either feeding tube or no hydration. It ain't easy getting old (or dealing with aging parents).
I am deeply saddened by reading these posts. Not only for the loss of your loved ones, but also for the misplaced anger at the hospice workers who are doing their best to care for them. My father is currently in hospice dying of cancer which has spread rapidly through his body. When he is alert, which is few and far between, he no longer wishes to eat or drink. The staff are not withholding it from him purposely and I'm fairly certain that in these other cases no one 'starved granny to death deliberately'. Being in hospice care usually means that you are currently at the end of your life, you are not likely to make a miraculous recovery. And as hard as it is to understand as it goes against everything we believe as human beings...a dying body does not require food or hydration like a fully functioning living body does. Many times it does more harm than good. My father was on I.V. fluids to hydrate him and because his liver is no longer functioning his body has no way to absorb those fluids and distribute them. This caused his extremities to swell and he now has weeping edema in the arm the I.V. was in. Weeping edema is when excess fluid just drips right out of your skin as it has nowhere else to go. Could we force feed him? Probably. Should we? Absolutely not. He neither wants it, nor can he process it. I would rather he die peacefully with his bodily functions silently shutting down, than to prolong his suffering by forcing food and drink into organs that can no longer process them. I know that the outward appearance is that they are killing your relatives by not providing sustenance, but the truth is that they are already dying and flat out do not require it.
Heartless Hospice -- My father is currently on hospice, it has been maybe two weeks, he has had steady decline since then. Right now he is dehydrated, high calcium levels and I had to pray hard and send emails to his doctors just to get an IV started to handle the dehydration. Why is it mandatory for a ill person to die of dehydration or starvation if it is not desired? This place did not want to give him fluids just to help with the confusion and give him a little more energy to sit up and take the fluids that he wants. He does drink fluids but he is so weak that he wants to lie down all the side.
I am not sure that hospice is good, I am feeling like they want to hurry along the death process, as they keep saying dehydration and starvation is part of the 'normal' process. At first I believed the lie but now I know of others that died at home of cancer and it wasn't from dehydration of starvation. I finally have fluids coming for him along with treatment for the calcium level, I am hoping/praying my father bouncing back ok and if he does, I am letting Heartland Hospice go, I think I would fair better just dealing with his regular doctor (the one that made hospice give him IV and meds) and if something major happens just call 911. I feel like they would do better then these so called 'nurses' that refuse to treat even simple dehydration.
I have a very hard time hearing the responses that Hospice's motto is hurry up and die.
My mother is nearing the end. She had a heart attack just over 2 years ago. She deteriorated very quickly at that time and dramatically decreased her food intake.
She came home from rehab and made it clear she was so done with doctors and hospitals and just wanted to stay at home.
Her dr. recommended Hospice. This was very upsetting to me as I thought she is on Hospice she will be gone in no time. Luckily I happened to have a friend that was a hospice nurse and I turned to her. She told me that my mother would greatly benefit from hospice. And that she has even had patients improve on hospice to the point of being released from their care. She no longer had to worry about venturing out to go to the dr, she would visit my mom at least twice a week which thrilled my mother. She was given an aide for 2 hrs a day that she has bonded with to the point that her face lights up as much when she walks in as when I do. Hospice provided a dietician early in her care to go over ways we could boost her nutrition as her intake declined. My mother began Hospice care 19 months ago. And I am convinced that being on hospice care has kept my mother alive longer and made the quality of life more of what she wanted. Now, as it is nearer to the end they are working with me to make sure she is comfortable and I am ok with the decisions I am having to make. I don't think I could have handled the last almost 2 years with out the care that hospice has given to my mother.
To the hospice caregiver who gave the medical rationalization for witholding water - you have been taught wrongly! It is NOT painless to feel thirsty & not be allowed to drink! I knew someone whose family used hospice care, and the dying friend was begging for water but they refused to let her children give her any water - she was clearly in pain & craving wàter so they should have let her have it! There is something very sinister going on, behind their philosophy of withholding water - I believe that whoever decided this water policy, was a cruel person with an agenda to hurry up & kill off old people as fast as possible, so they teach that to unknowing hospice workers who blindly believe what they are taught. If I'm ever dying a ßlow death, I plan to warn my children NOT to use hospice care, but instead, just to hire some individuàl to help with whatever I need. The hospice workers should comply with whatever the family wants, not try to force the hospice "rules" on the dying person who is begging for water.
Oh gosh, reading all your stories and advice has me balling over here. I lost my dear mother 4 years ago and I took care of her most of my adult life. She gave me the happiest years of my life and I adored her, and always will. She never, ever, said a bad word about anyone and just spread love to everyone who knew her. She was in hospice for 7 days and I went a little crazy thinking that they weren't going to give her IV fluids. The hospice nurses were amazing and very kind. They explained to me that giving fluids would not be good for my mom, as her body wouldn't be able to process them. We think she had pancreatic cancer. We knew she had liver cirrhosis, from Sarcoidosis as she never drank alcohol. I would do anything to bring her back. I swabbed her mouth with those wet sponges. I told the nurses, I wanted to bathe her and wash/blow dry her hair. I wanted as much momma time as possible and no one could love her, like I do. I THANK GOD I left corporate america to pursue a career in massage therapy as I massaged her daily, for hours at times. She just slept and slept. Even if you don't technically know massage therapy, anyone can massage their loved ones. Especially their head, hands and feet. It's just love, folks. When she passed, it was very peaceful and she opened her eyes for the first time in days and looked up and to the corner of the room. I know God and/or relatives came for her. I Thank God she went peacefully, or I think I would completely go insane. I also have to share, that 20 years ago I had a near death experience, where I choked on mozzarella cheese. I was lifted above my body and saw a white/yellow light that looked like a tunnel getting bigger. I then looked down and saw my body on the floor. My boyfriend, at the time, ran over and picked me up and did the Heimlich maneuver on me and I , literally, floated back into my body. I will never forget it. My back pain was gone while up there and I didn't feel like I couldn't breathe. I felt at total peace, but I'm grateful I was given another chance at life. I got my act together, shortly after that experience and really took care of my sweet, innocent, darling mother. Peace and love to all of you. Tell your loved ones now, that you love them.
To the writer above - great piece, thanks for sharing that wisdom. TODAY is the day to tell friends anf family that you love them, for tomorrow may not happen for you, or for them. Each breath is a gift, as is each day - a gift. That's why it's called THE PRESENT. Unwrap it joyfully and share it with everyone you know!
After reading several of the discussions on here I have decided that a lot of people don't understand what Hospice is. My Mom has had at least 10 small strokes and was getting forgetful and not acting like herself and had frequent hospitalizations that always ended with her coming home and family caring for her. In June she got where she could no longer get out of bed without help and was totally dependent on us. On July 25, 2016 she had a larger hemorrhagic stroke and was no longer able to get up, feed herself and was incontinent and was admitted to the hospital. She was to go into a Nursing home on Aug 10th for 20 days of rehabilitation and then return home. The night before she was to go she had a major Ischemic Stroke from a blood clot and the entire right side of her brain was affected from front of brain to back with some of the left side affected. Her Neurosurgeon asked about a Living Will or if we knew what her wishes were. They had never asked this before so we knew it was different. I knew that she never wanted to be put on a ventilator and that she had said previously if she could no longer care for herself to shoot her. We weren't going to shoot her so the Dr suggested Hospice care for her. He said she had a little bit of recognition left and she can squeeze our hand if we ask her too so I was really not sure whether to hold on to my Mom for my sake or follow her wishes. Hospice came in and evaluated her to see if she was a candidate for Hospice and based on scans and her inability to swallow or move her left side she was approved for admission. It was never a matter of them wanting the money from her admission or them wanting to get rid of a patient quickly so they can admit more. It was totally my Moms and our choice. She is only slightly alert for a couple of hours every day or two and then is only able to partially open her eyes and can't communicate with us. She had food and water stopped on Monday Sept 15th at hospice but was not receiving anything but medication at the hospital for 6 days before she was moved. This has been the most horrible time I have ever gone through and the first time we have dealt with Hospice but I truly believe that they let a person die naturally as God intended and don't prolong someones life just because we want to hang on. Please take the time to get a Living Will drawn up and save your loved ones the decision making. Let it be known what you want so they don't second guess themselves and their decisions. To all the Hospice Nurses, thank you for what you do and for helping our loved ones have a peaceful, natural passing to the next phase.
I used to be a staunch supporter for hospice and even wrote a 20 page support paper for a bioethics class 20 years ago. I am one of the last few remaining family members and have been there for multiple people as they transitioned out of this life. I'm not against hospice in theory but against what occurred to my own mother.
My mother stopped making red blood cells and lived for a few years on transfusions. It is one of those illnesses with no known cause but we all know the outcome. She finally became tired of treatment when the doctors would only give her 2 units of blood at a time instead of the 4-5 units required to relieve symptoms.
She agreed to hospice care after assurance that she would remain in control. She refused pain medication except Alieve and wanted to stay on her maintenance meds for diabetes and heart (A-Fib). After all there is no comfort in having to go through unnecessary pain of diabetic acidketosis while waiting for the terminal illness to take her life.
Unbeknownst to me, she had a UTI and was mid treatment when she went into hospice. They refused to provide antibiotics even though it became a source for discomfort. She had such frequency to use the bathroom that her bed broke from the getting up/down routine. Mom begged for antibiotics and hospice responded by prescribing more pain meds. I reached out to her PCP and got her antibiotics. Why did I do this? Because she was in control of how she died and she wanted them. They also would remove needless pain. No point in going through discomfort unnecessarily. Out of compassion we requested a catheter and (as common with UTIs) the urgency did not subside.
Since her bed had broke, she went to stay in the hospice house until her hospital bed arrived at home. Unfortunately, the timing meant she could not take any of her antibiotics. When I visited her after having the hospital bed delivered, she was so medicated that she could barely talk and physically 10 feet from the phone. This means she could not order food or water. The first thing she told me was she was hungry and didn't like how she was feeling. I ordered her mashed potatoes. While there the nurses told me she wasn't hungry (after I placed the order) and that she wasn't taking her pain meds. I explained she did not want pain meds and would request it when ready. I witnessed the staff try to sneak in meds by mixing it with the mashed potatoes. By the time I realized what it was, Mom had already taken a pill. I was horrified. Not because she was dying but because her explicit wishes were not only ignored but overridden. I demanded they release her back home since there was a bed for her. It took 3 days to get her home.
They had overmedicated her for the transport home and the EMTs left her in a wheel chair in the living room. By divine intervention I was able to pick up a 220+ lbs woman and place her in the hospital bed at home. The next 12 hours were spent flushing her system with water and waiting for the pain meds to wear off. I did not force her to drink but did make sure she had fresh ice water available if she wanted it. After drinking 64 ounces I think it's safe to say she was thirsty.
I did not do any of this to extend her life. I did it because this is what she wanted and it provided her comfort. I also offered her pain meds every hour just in case she wanted or needed them. Due to the nature of her terminal illness I was fortunate with being able to guesstimate when it would end which would have been 2-3 months after she passed away.
She had caught on to hospice sneaking meds so she refused all medication until she returned home. Mom used words like betrayal, loss of trust and forced treatment. A few days after returning home her heart started acting up as it tends to do without the maintenance meds. I asked if she wanted to let it go or seek treatment. It was all about her choice. She decided it was time. I supported her decision and continued to offer food, water and meds every half hour. She denied all three. In fact she told me she was afraid of the final minutes of life but wanted to be alert. She agreed to a normal prescribed dose of morphine at the end. Over the course of her last hour, I metered out the normal dose (a little every 15 mins) to relax her without limiting her communication. She was able to communicate all the way until the end. In my heart and based on her response, she died on her terms with dignity. This would not have been possible if she remained in the hospice house.
I should clarify that normally it would have been a more violent end if her actual terminal illness got her before the heart. She went peacefully after hugs, saying we love each other, and simply stopped breathing. Remarkably there was no death rattle, soiling, or anything I had become accustomed to when other family members had passed away.
What angered me was the amount of time spent fighting for Mom's wishes to be met while making her comfortable. Staff had assumed I didn't want to let go rather than realizing they were inducing unnecessary discomfort and induced Mom's distraught by not listening. Part of the problem was Mom had used a standard templates for POA and her last wishes. The first thing I did upon returning home was draft a new POA and living will explicitly stating what I meant by life saving measures. For example, please treat a bed sore or UTI if I get one so I am not in more pain than necessary while waiting for my terminal illness to take me.
For those of you that say dehydration is not painful, I have a unique perspective. I became dehydrated and it was excruciating until you hit a point of simply sleeping all the time. It took the hospital over 12 hours to hydrate me and it was excruciating - to the point that I thought death would be a good alternative. The difference was I did not have a terminal illness and was in my 20s. The patient will know when it's time to stop food and water intake. Listen to them and acknowledge their wishes. However, it is not comfort care if the patient is forced to go through the dehydration process before their body naturally chooses it. I've also had organs die because I did not present typical symptoms. Part of the problem is that medical staff don't know your loved ones as well as you do. Sometimes they can only go off generalizations which captures 80% of the population.
I still support the idea of hospice but not how it was implemented for my Mom. The implementation was in conflict with the goal. The doctors and nurses are human and can make mistakes. Have the hard discussion with your loved ones before they need it so you can advocate on their behalf according to their wishes. In the end, I have peace because Mom died on her terms. This would not have been possible if I had not known what she wanted.
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