Why does Hospice sound like assisted suicide?

((((hugs)))) Crystal

Physical Therapy can sometimes be provided under hospice if there are realistic goals that will help the person function better or feel better, or prevent painful contracutres or deformities. If it is just doing a passive range of motion, families and nurses are expected to do that though. Angie, your mom has a simple goal and it seems reasonable to work on as long as it's potentially acheivable, and its not wrong to have hope even for a small thing. You do have to beware of therapists who might be in it just until the funding runs out reagrdless of whether they actually acheive anything or not, but hopefully that's not the case...

I forgot thank you Ms Daisy for your comments. I am trying to do all the right things but at times don't know what if right at the time. Long as I keep Dad comfortable that is my main thing and I always ask him if he has pain. I have seen a great decline in the past few days and I am scared. With my faith and all I am still scared. I know I have to let him go and when that happens I pray for the peace to all in our family. I need to talk to the nurse today when they come and see what they say. I am having a difficult time now dealing with it and at some moments I am strong but more so I am lost. It is hard to express these feelings correctly I only know I can write how I feel at this very moment. I will try to come back on later today. Blessings and a gift of gratitude to all of you on this site. Just coming in here makes me feel like this is all my family too. What a great bunch of loving people here. God Bless you all.

I so agree with Angie on it should be a family collective decision on parents care, etc. I do not have POA but I have been sole caretaker for two years now and I talk with my family members and they are too distraught to talk about those hard conversations so it leaves me to do it and I do. I hope the family can gather around and talk about what is most important for your mother and not be one sided in the conversation. Blessings to you Angie.

Since Mom would not be getting Hospice at home (she has an assisted living apartment on self-pay, but she has been at a rehab facility for a month, Medicare-paid) if would be much more difficult to have her go on and off Hospice (Medical paid if necessary). She does not want to give up her apartment 'just in case'. We cannot afford round the clock care in her apartment, and they will not allow you to live there if you need hospice anyway. You have to be independent.

Mom does want PT, wants to try, but hates it at the same time - very conflicted. Dr does recommend it, Psych Dr said last night he could tell she was depressed but not ready to give up. She is on antidepresants.

Jeanne - not sure I understand what you mean by PT and suicide relating. Mom IS making progress walking in PT - but no one can tell if she will be able to get in and out of bed and wheelchair herself (that is all Mom wants).

I am not OK with sister having the "power" even if it is legally true. It should be a collective family decision to interpret Mom's wishes.

Did the doctor recommend your Mom receive PT? With failure to thrive, PT would seem to be extreme and tiresome for your Mom, probably doing more harm than good. My Mother would have a good day of PT and then 3 days of recovery.

Some patients go on Hospice and come off several times during this final stage of life. The family can even make that determination themselves.

I know this is very painful and stressful for your family. Please enjoy the time you have left with your Mother and not spend it being hurtful to each other.

So your main concern, Angie, is whether Mother continues with physical therapy or not? Is that what you mean by "suicide" -- continuing with physical therapy?

I wonder if your sister would be willing to hold off on hospice while Mother tries a round of PT? Ultimately this will be your sister's decision, since your mother gave her to power to decide.

Crystal1224...I'm sorry to hear that you and your father are receiving a mismanagement in care. I can totally understand why you would feel a little frustrated.
When mom was in the middle of her night walks..up and down all night long. I was at my wits end. That's where hospice did everything for me to help mom sleep. Although after many trials of meds. I made it my own authority to take mom off of the drugs hospice prescribed and gave her only over that counter medications. I don't know what kinds of drugs your dad is on right now. But I do know with mom, if it didn't work or made it more difficult for her...I would immediately stop it. I had the control over what was given. I monitored her and distributed the medication and if it made her too groggy. I stopped it. I also went on my computer and learned as much about the disease and the medication that I could so that I knew what it did and how it affected mom. All of my hospice gals were very respectful and considerate. And if I had any issues at all I would call the nurse or the social worker and they would resolve it for me. I'm so grateful for all of them... I could not have done it with out them. I hope for the same for anyone who is offered Hospice. Because I believe they are angels sent from above. God Bless.

I can totally understand both sides of this coin. I will not say too much on this how I feel about it. I have had family members and friends that had great hospice people and the thing I am noticing is the total confusion with medications between the doctors and the regular doctors. I know they are great helpers if you get a great team, but when you have so many different people coming in the home and upsetting to your relative it is very hard to bare witness too. I am between a rock and a hard spot right now with it all. My father says everytime they come here they make his heartrate go up. Some of the things that have been said to him and to myself is so out of the ordinary and unbelievable. Just like anything in this world you got the great and the not so great. My final request to everyone around him is to have dignity and respect for my father as he has had a hard time dealing with leaving us as he has fought all his life to be well. When they constantly upset him then I had to say something. I stay in the room now when they come and I try to be open minded but not everyone has the same experience with the medical professional and I have utmost respect for all of them but some things are just unreal. I am not at all bad mouthing Hospice at all but you must speak up about what is bothering you so you can get the proper care for your loved one. I too was concerned about the heavy medications as my father has had some serious falls here and it concerns me very much now that he is getting weaker and not eating the meds are very strong. I wish there was an easy answer to all of this but there is not. We do the best we can. They do the best they can. It is hard for family members like myself to watch this going on. I have been on overdrive with everything and my body is worn out but when my father can not fight anymore I assured him I will be standing up for him and will continue his fight. These end of life issues are the hardest on the entire family and even harder on the patient. I just ask that anyone that comes to see my father while he is still in my home with my son and I, that they have the utmost respect for him. I am his daughter and have tended to him for two years and this is the hardest thing to watch unfold day by day. I do like our aide and the chaplain and we have had so many different nurses - each with a different views and opinions and being under duress with exhaustion leaves me not able to sleep very well. It is so conflicting all this with so many different doctors and nurses telling me so many different things all the time. Here is major confusion for me and I can only wonder the upset and confusion it is causing my very ill father. It is a hard call to make. Just talk with the leader of the team and express your concerns and see if you can come to some peace with it all. It is hard but they are there to help and we are there to watch it all so we need help as well. I will keep you in my thoughts and prayers. We need the professionals and hopefully you get some great helpers. Blessings!

Jeanniegibs - Mom is unsure of what she wants. Last week, she said to all of us on a conference call: "I don't want to be here anymore, but if I am here I don't want to just lie in bed and not try". She is very conflicted.

My sister has medical PofA, and she is leading Mom down the path towards Hospice - before Mom is ready herself. You know how someone can influence an elder person? My sister is doing that, saying she is honoring Mom's wishes. All of us sibs interpret her wishes differently - that is the problem. Mom has a bit of short term memory problem (probably from the painkillers) - but no dementia. I don't want Mom to give up on walking and doing PT until she is ready to give up. She is not ready, too wishy-washy right now. Obviously no PT under Hospice - so think there should be no Hospice talk for now. Family disagreements abound, and the sister with the medical PofA likes and takes advantage the "P" part.

I am glad you got such wonderful help - I do believe in Hospice in general. And, I am very sorry for your loss.

Hospice is not assisting suicide. To think that they are is just......not right. Hospice literally saved my fathers life! My Mom was so sick and weak from ALS and all the Dr's did was send her home and tell her to come back in 6 months. She did not last 6 months! In Hospice, if you are terminally ill, they allow the disease process to proceed. They do not fight each little secondary infection or problem that may arise as a result of your disease. This is not suicide, it is natural disease progression. When no more can be done and death is inevitable, why not go in peace, pain free, with a little dignity ? I can not speak for everyone, but I know for my Mom....it was a Blessing! If Hospice is not for you, find a way that is, there are so many who have been touched by angels of Hospice!

Angie4567, does Mom want hospice care?

If her doctor is willing to order it and she is in "failure to thrive" mode why not apply? If she isn't eligible yet there is no harm in trying. You can try again later.

In my experience, Hospice is neutral regarding the timing of death. They aren't trying to hasten it or to postpone it. Their goal is to make the remaining time, whether that is weeks or months or even years, the highest quality it can be under the circumstances. I don't know specifically what they can do for your mother, but what they did for my husband was awesome. As a small example, when saliva accumulated because he had trouble swallowing, they put a patch behind his ear to dry up his mouth. And they didn't have to justify it to some insurance company and I didn't have to leave the house to go get it. When he began to develop a bed sore they took care of it and showed me how and also brought an egg crate mattress pad the next day, to minimize the problem. When his belly was distended I described how much trouble he was having passing urine the nurse brought in a sterile catheter kit and solved that problem immediately -- no transporting to an ER, just do it right here at home. Lots and lots of little things, none of them remotely close to helping him commit suicide, all of them making his end of life a little or a lot less uncomfortable. They definitely would have honored his Do Not Resuscitate wish, that that never came up -- he did not have a heart event. They gave me information that helped me recognize when my husband's time was at hand, and he died with me at this side, holding his hand. They took care of all the paperwork of reporting the death and having the body transported.

Hospice would do an evaluation and also take into consideration your mother's doctor's recommendation. If in their best analysis your mother is not actively dying, then they cannot accept her. If they accept her, what do you think they could/would do to "assist her suicide"? [From a strictly selfish point of view, hastening a death would mean losing a patient Medicare is paying for.]

I hope that you and your sister can come to some agreement. Do either of you have healthcare power of attorney?

My experience with hospice for my dad at end stage cancer was very similar to Mzdaizy's. They were wonderful, professional, reassuring and answered questions along the way. My parents made the choice for hospice following hospital referral. We supported that. Please don't think of it as assisted suicide, its anything but. It is a lovely, compassionate way to enter the last stages of one's physical life. Many prefer this over the bells and whistles, disruption of a hospital stay and feel a personal relationship with the hospice caregivers. Give it a chance and if you and your mother (she should be the ultimate judge); then you can choose something different. Also, sometimes, a loved one's ability to communicate privately with hospice and not have to worry about their children, spouses, etc. feelings can be very liberating for them. Hospice can be a great liaison between you and your loved one and accepting/understanding each stage til death.

Kull's words: "Most people know they're dying". are so helpful. Now that modern medicine has extended life so much longer, we have to be sensitive and compassionate to realize when it truly is a person's time to die.

Shortmomma1,

Hospice is not for everyone and I really believe we all were trying to give you a little insight on how our dealings with Hospice were. By all means, if you do not feel comfortable going forward with Hospice, then I would not. This is a decision you will have to live with and reflect on for years to come. It is extremely difficult when our parents and loved ones get older... So many decisions, which is the right one, the best one? If you are able, I would talk it over with your Mother and go from there. She is very lucky to have your support and between the two of you, and I completely believe you can come up with a health care plan that does not include hospice. Good luck, God Bless =}

Angie4567: My mom was 95 and she didn't want to die. She had to be admitted to a NH in Oct 2012 because the type of dementia she had hit hard, and she also had COPD. Msdaizy and I have alot in common. Our mothers went quickly. Hospice was the best thing that I could have ever asked for. Because of the dementia by Dec 2012 my mom was doing as Gcrow56's brother was doing, her food & drink were going into her lungs. Then she was diagnosed with pneumonia. Mom had a DNR and made me promise not to let them "poke" her with needles, IV's, etc. I asked for a hospice evaluation and to my surprise they not only said she qualified, but she qualified for 24hr nursing care. I was in shock, because my mom was still alert and sitting up. She was just very weak and not eating much. They sent a nurse in the day after the evaluation. She said she could tell by mom's lungs that she only had about 2 weeks. Again, a shock, because mom was talking to her and seemed ok with the exception of being very weak and having bad congestion. She was getting every treatment associated with the COPD/pneumonia. The hospice nurses assured me she would be kept very comfortable and that's what I told mom. She knew she was "very sick", and I told her not to worry, all the meds would be given to her by mouth. That night was the last night she talked. The next day she was unresponsive. Those hospice nurses took such great care of her. I would have gone out of my mind if it hadn't been for them. No only was she cared for, but so was I. Believe me, hospice is not there to speed up the person's death, they are only there to provide comfort and relief for pain. My mom started getting pain morphine every 4 hrs., but day 3 any time she showed pain (in her face), they gave her the morphine. She was comfortable and died peacefully on Jan 1st.

Hospice is hospice for 1 reason, End of Life Care... I just recently lost my little Brother he was on hospice for 3 years. I took care of him the entire time, the nurses would come in twice a week and the person who bathed him 3 times a week. His hospice team was great, they got very close to him very fast but the thing is hospice will give a patient medicine for anything they need except for what there on hospice for. In my brothers case it was his lungs his whole life he had to have his food puree to prevent him from choking (he had cerebral palsy) but he would always cough while eating and inhale food into his lungs. I wasn't happy at all in March 2012 when he got a UTI and eventually it went to his lungs and the doctor would only treat him for the UTI. We were told when he was just a baby that he wouldn't live past age 7, well when he turned 41 he went on hospice and we were told he had less than 6 months, and I got 3 more years with my brother. I slept on his bedroom floor stayed with him 24/7, it was a hard thing to watch and they kept him very comfortable with medication etc ... I don't think I could have done it without hospice support. To this day the nurses, Chaplin & the volunteer still come over. Being a hospice nurse is a very emotional stressful job, they do get attached to their patients I know how much they loved my Brother & he loved them.It takes a very special person to do what they do. Gail

Angie4567...Hospice was so helpful. With mom she was 91 with progressive dementia. I know it sounds like a death sentence, but please know, they were my sanity. Mom had declined to fast I was no way I would be able to do the things those wonderful people did. They were all about comfort and care. That involved a CNA 2 times a week to help with bathing or any other hygiene needs for mom. A nurse came to visit us every week and near the end 2 times a week. She kept us up on all mom's medications. They supplied me with diapers, gloves, bed pads, all the medical equipement she needed for safety. I got a hospital bed when it came time for it. They were angels...listened to my cries and concerns...and helped me where ever I needed. When I was at my wits end they gave me a respite week. 5 days of a much needed break. Took care of my mom with such love and care. I would highly recommend them any day. Like I said...they were my lifeline when it came to mom's care. I hope you understand..they will never do anything that you wouldn't want them to do..but they are about giving comfort and care to the loved one and that also means helping with the anxiety. My mom was treated with such value and not ever did I think they were there to help her die. But in the very end ..they gave her a dignified way to go...with no pain or suffering. The dementia killed my mom..Hospice was there to help her be comfortable. Good luck with your momma...God Bless.

But...what if my Mom is not 'actively dying'?? My sister has read so many positive posts in various places about Hospice that she is pushing Mom (and us other sibs) towards Hospice. Mom's Dr said she would sign a Hospice order, too. But Mom's diagnosis is back pain and "old age, failure to thrive and depression'. She is 89 and just survived Norovirus and Pneumonia. Mom is now in a rehab place and depressed because her PT is going slowly and she can only walk with walker a short distance. Mom wants to give up....but unless Hospice assists her suicide - what can they do for her?? Mom has a DNR. We all had a telephone conference with Hospice and even they say she may not qualify. Sister still wants it! I really think she thinks they will honor Mom's wishes and help her die.

Lildebb39 is right. The disease is what's killing them. Hospice will make them feel dignified and comfortable. There is no reason for her to suffer or have any anxiety over her breathing. They will keep her comfortable and ease any pain she may have. COPD is scary...try being a fish out of water. Can you imagine how scary it would be to breathe. Thats where they will come and assist her to a level of comfort. It's not suicide at all. They don't kill you..they comfort you. Its the disease thats killing her. I'm not familiar with COPD as much as dementia but I know when mom was in her last hours...she never had any pain or discomfort. She showed any wrinkles in her brow she was administered medication to help. The dying was inevitable...so why should it be so excruciating and scary. Hospice are angels on earth.

It is all your perspective. My Mother had ALS and utilized Hospice services. If she would not have, it more than likely would have killed my dad. For our family, Hospice was a blessing in disguise!
Hospice did not kill my mother, progression of her disease did. Hospice made her as comfortable as possible!! Mom ended up with pneumonia and got a fever, hospice took her into their unit as in-patient and everything was wonderful. Very professional, let mom go with her dignity and with church members around praying for her.
We had a wonderful experience and I hope your mother has the same! God bless.

Im so sorry for everyone lost but working for hospice has been a greatly esperience for me the most i love about it.. i get to be there with the love one when they take their last breath and for the family that nees he lively confort and i get to know them as the process proceeds ..but imma tell you a secret i was in hospice when my father passed on and i couldnt even do my own love one and that is the hardest thing to do for ANYONE that does hospice and see it on their love one

Partly because the West, and Western style medicine has declare death; the natural process obscene and with it the fear and pain of the actual loss of the loved one. The thought of NOT getting in the way of the death process seems totally against all human judgement. People cling to life harder than anything and why should this not be, but Death is part of life and one, everyone must let go eventually. I'd say, talk to everyone whose opinion you value, get competent medical advice, speak to your loved ones and decide what feels best for you. If you are absolutely not comfortable with the letting go of your mom this way, that will be your decision, also depending on what your mothers wishes were.

It is a very upsetting situation all together. and no one can make your choices for you. Or tell you how you should feel about it.

Remember, even when she is gone, your mother lives on in you and all she was to you is never gone.

It seems as if your mother has been ill for a very long time. Mothers are good at "protecting" their children from the severity of their illnesses, and children are just as good at taking what their parents say at face value because, quite honestly, they'd rather believe the good than worry about the bad. It's not until things get to the point that the parents are unable to care for themselves that the kids really get a first-hand look at the actual reality of their condition. I'm guessing you have only recently been made aware of just how serious your mother's condition is, and you are trying to absorb a LOT of overwhelming information all at once. Hospice is not assisted suicide, as others have said. The fact is that your mother is dying, and she wants to go peacefully - that is why she has accepted the help of the hospice team. There's nothing wrong with or "morbid" about her being involved in the dying process. Look at it as you having time to say what you need to say to her, and her to you...get those memories written down...ask her to write your children (or future children even) a letter for their graduation/wedding/etc., ask her the names of people in old pictures that only she knows, etc. etc.

I'll say just one more thing about hospice and then shut up. Before my experience with hospice with my dad, I used to think what a depressing job it must be. As a nurse, I am used to focusing on helping people get better. The problem is that these days people can be kept alive long after they are enjoying a quality life. After my experience with hospice, I have and still do consider working for a hospice in the future. I now think there is nothing greater in this world than to be able to help someone through the process of dying - not just death but the time before that as well. Most people know they're dying and must find it so comforting to have people they can express their fears, their thoughts, their unfinished business, their regrets with because I know in my dad's case he didn't want to upset any of us with that. He seemed so ready when the time came both physically, mentally and spiritually and I know it was in part because of the hospice staff he had in his last months. This was a journey I'm so very glad I was able to share with him and one I'll never forget. Dying at home with family all around is so very different from dying in a hospital. I know, I've seen both now. Best wishes ~ Kuli

msdaizy - I am so sorry for your loss but glad you're mom was comfortable as she passed from our world to the next. It's so very hard and will become harder in the days and months to come but take pride in the care and love you gave her until the very end. That is the best thing any of us can do for those we love. Angels be with you ~ Kuli

Hospice is the best thing that ever happened for me and my sweet mama. She had Lewey Body Dementia and if they weren't here to support I would have given up on her along time ago. With hospice you have the support of many caregivers, CNAs bath aides, doctors, nurses and the comfort pack that takes care of all the needs for any comfort and care meds. All paid for by medicare. Hospice workers came to my home 2x times a week to bath or care for mom with any hygiene needs, the nurse came in 2x times a week in the end. They set us up with equipement and hospital bed, trays, bedside comode. Any supplies to help her with incontinence. It was a God send...not assistant suicide. If you have to do this all yourself you will see it's a pretty hard thing to endure. And they are there to help you with anything you need to care for her. It looks like your Mom is in final stages of COPD and she is having panic attacks, thats where they take over and help her with any medication that will keep her calm and make it easier to breath. They make sure that in the end your mom does not suffer. I know this because today at 1 am my sweet mom spent her last 5 days on this earth in the Hospice house. They kept her comfortable, without any distress. These people that work for Hospice are the nicest, most caring, loving and compassionate people. I feel so grateful to them for making moms process of dying easier and dignified. I hope you will see that and give them a chance. Because I will just say your going to be overwhelmed with the anxiety of seeing her suffer at any time. Good luck and God bless.

My mom just passed away January 1st. The nursing home suspected pneumonia and ordered a chest x ray a little over a week before. THey were going to give her iv's and blood work. I refused because my poor mom (95) didn't want to be poked and prodded any more. She signed a DNR over 25 years ago, and I respected her wishes. I called in hospice right away. It was the best thing possible. They gave her medications without needles, and gave her 24 hr care. They were so supportive of me and my family. If it weren't for those people my mom would have never been able to go as peacefully as she did. They give the meds to control the congestion and relieve and stress and pain. My mom passed away very peacefully at 4:05 am New Years Day,

I know many people that say Hospice is the best gift they gave their family and loved one. As a Hospice volunteer, I always felt I was the one gifted by being able to share such a special time with my families.

I've had people say that their loved ones' condition was like a "big elephant" in the house until Hospice arrived. Families usually come together as a unit at this time and talk about things they should have shared years ago. Perhaps having us there helps them feel less burdened and they are able to open up to each other.

I am so sorry for your loss and I am glad you were able to spend time with your Mother. I am sure it meant a lot to both of you. God bless!

Experience, I am very sorry about the death of your mother. Sincere condolences.

She would have died with or without hospice, of course. The point of hospice is to ensure comfort during the dying process. Sometimes they are able to be more successful than at other times, just because of the nature of various diseases.

Since you were 750 miles away, and since you were not her healthcare proxy and not her POA, it is not surprising that you may not have gotten all the medical details. I think you are overreacting and misinterpreting what happened and what caused what, in your grief. That is understandable, but it would be a shame for others to take your from-a-distance view too literally.

Your mother appointed a church person to make health care decisions for her when she could not. (I don't know why she did not appoint you -- perhaps because of the distance.) You last saw her when she was cooking and mobile and could care for herself. But when the body starts shutting down things change very rapidly. The local people, including her doctor and her health care proxy, made decisions with her, to promote her comfort as her body went through the dying process. Your mother was not murdered and she did not commit suicide.

My husband was on hospice for about 5 weeks and it was a wonderful, caring experience. He was dying. There was no question of that. He was able to be comfortable and mostly in good spirits.

Statistics show that persons on hospice live slightly longer than matched counterparts who are not on hospice. There is definitely no goal to shorten the life span. Since Hospice only gets paid for patients while they are living, it certainly would not be in their self-interest to shorten lives.

Once again, I am truly sorry for your loss. I hope you can eventually find peace and comfort yourself.