Hospice death vs. Right to die?

Stacey thank-you for sharing your story. I don't know why I continue to dwell on my Mom's final days instead of just remembering her in her healthy, happy days. Its so pointless on my part.

What made it so hard for me is I had been talking to her on the phone. I thought she sounded weird so I phoned her right back after we had been through talking.
I asked her if she was okay and she said "Yes, dear I'm fine" I said you probably wouldn't tell me if you weren't okay and she said "Yes, Your probably right" Then, I sang that song by Carol King, You've got a friend to her.She laughed and said Thank-you dear, I love you always" Half hour later the nursing home phoned and said they found her unresponsive and they rushed her to hospital where she died seven days later. She never ever gained consciousness. That phone call was my last conversation with her. Even though it was tender and sweet, I wish I could of had a chance to really say good bye to her.

I felt the hospital rushed me into a decision without giving me time to really contemplate things. We had gotten differing opinions from the neurologist and the primary doctor on call. I wish everyone had been on the same page so to speak.
My family left it up to me to discuss things with the doctor and I feel he bullied me
and I wish the whole family had been there.

I wish and regret and I know it is pointless as I said earlier but I just can't shake the constant guilt and regret.

Ah well, Stacey. Life does go on right?

Gershun, my story is much like yours, however, we had our Mom home in hospice care until the last 7 days, then to the hospice Hospital ,where our home care team noticed a drastic change in her, and advised this. We were told that she was Actively Dying, and suggested to my sister, whom she was living with, that with so many small children about, in our family, and for my sisters comfort as well as for my Mom, the Hospice Hospital would be the best choice, and it was. The Dr's and Nursing team, took us into a round table conference of sorts, and explained exactly what should take place, comfort care only, and as difficult as it was, it was the right choice. She died,after those 7 days, of IV morphine, and mouth swabbing with water, and careful turning, every 2 hours. My Mom had Uterine Cancer, which had metastasized to her pelvic bones and she was in a great amount of pain, for the whole of 5 months, and had been on very very high doses of morphine even before entering the hospital. They told us her organs were shutting down, and that when your kidneys are shutting down, that there is changes that take place, with elevated BUN AND CREATININES, that cause the body to feel less pain, and even a euphoric feeling, a
but also mental decline and infuced sleep. Knowing that the alternative at this point would be Dialysis, that was not an option, nor would it have been her choice. With 6 of us, as well as Adult Grandchildren. She was never alone. She faded out of consciousness after 3 or so days, and after that, she was asleep. The morning she passed, she awoke, and my little brother was there with her, he put us all on the phone to her to say our Goodbyes in case we didn't get there in time to see her awake, but she did stay, in this semi-conciousness, until we all did arrive, and again we Loved on her and kissed her, not knowing if ee would ever see her awake again in her life, and it was the most incredible experience I've ever had next to the very simular situation that happened when our Father died. And then she slipped away, quite peacefully. It was of course so difficult to lose my Mom, my best friend, but she was so tired of fighting the horrible pain, and she ABSOLUTELY KNEW, our Father was right there waiting for her,and that too gave us great solace! I believe Hospice is there, for those who wish to take advantage of Comfort Care, and to assist us in recognizing the end of life and helping us all through this difficult process, and certainly with us, that is exactly what they did, and so much more!

My Mom was in palliative care her last days. It was explained to me as "comfort care" They stopped all fluids. Just had her on oxygen. Gave her morphine and something to limit secretions. It took her six days before she took her last breath.

It was painful to watch. Even though logically I knew she was mostly unaware of anything. I still felt like a heel watching my Mom slowly disappear. The alternative
would also of been painful for me and probably even more painful for my Mom.

It was not explained properly to me. That is my main complaint.

That's why voluntary euthanasia has its role.

Yes, in my personal view, when hospice was called, we knew daddy didn't have long. Better to know in advance what exactly the patient wants. I think our care of the actively dying can be positively barbaric--lines, tubes, ventilators to do what? Prolong a miserable existence? I've seen too many families torn to pieces by the in fighting and arguing over what a loved one would have wanted.

Usually hospice means end of life care.

Until our legislators decide to do the right thing and put thru a bill about the Right to die with dignity, we will have this problem. It sounds insane, I know but either let one slowly starve to death until his/her organs finally stop working or a humane way to die as long as a qualified doctor says there is no hope, no chance of getting better and the patient will not survive past a certain time; otherwise if you try to help someone along or even get the doctor to, you can get 2 to 10 in the state prison. Does that make any sense at all?

My mother was a nurse. She was firm in her POA for health care that she was NOT to go to a hospital for treatment when death was near. She wanted no part of chamber of tortures involved in breathing tubes, feeding tubes, broken ribs from resuscitation, staff infections, etc. During her lifetime, she nursed five close relatives at the end of their lives, which were happy and relatively pain free. She lived until 93 and 1/2, in her own home, smoking cigarettes and an occasional glass of Rheinwine, until the end.

Very good discussion. Many of us are old enough to remember how death came about 50 or 60 years ago. I can remember my grandmother and the other church ladies would go and "turn" my grand dad every few hours. The family was very religious so no drugs, that's addictive, no whiskey, no nothing. He held on for day after day in agony. My Mom who was not part of this clan of church ladies, would argue to give him some painkillers. He never got any and died like so many in those days, suffering greatly until the very end.

It is so wonderful to see the wide acceptance of hospice these days. But more education needs to be done. Lots of folks still think that hospice KILLS people. These folks should have seen my grandad die.

Yes, dying in peace is wonderful. He never cried out. He just went to sleep and never woke up. But, I was so fortunate that he could talk to me for the last two days. We shared so many things and our love was never stronger than those last days. We appreciated what each of us had done for the other.

It is not a pill, sorry about that. It is liquid Morphine.

Mmills0313..You are so right. In fact, they used it on my partner to calm him down. He was having trouble breathing.. Toward the end, it was to calm him and let him swallow easier There was definately Verbal discomfort and his face would grimace. The drug calmed him down a great deal and he was able to sleep and not be all over the bed. He was trying to get up to go to the bathroom. I kept telling him he did not have to get up. And once he fell after he was able to get himself out of the bed at the bottom. When a 200 lb SOLID man falls, I had to call 911 for help. He could not understand that he had a cathater.

Morphine is not indicated just for pain management. It can also relieve shortness of breath to ease the dying process. For details, ask the prescriber, pharmacist or nurse exactly what symptoms indicate use of each type of drug at end of life. There are other signs such as crying, grimacing, rapid breathing to name a few that indicate non verbal discomfort expression.

Hospice does not kill anyone. My Love was in back pain and could not even sleep. They were talking about giving him a couple of shots in his back before they put him on Hospice. Just getting on the table to get the shots would have been hell for him. He chose to go on Hospice. As hard as I try, I cannot remember how hospice even came up. He had always told me he did not trust Hospice. So, it shocked me when he agreed to it. He also asked me to marry him. I guess I thought he would last longer on Hospice than he did. He only took about 3 weeks to die. He also was covered with a rash for nearly 8 month or more that NO DOCTOR could explain. I was so angry with the Dermatologist when he told me he had no results from tests. After he passed, I was reading an article on rashes. It said that if something is wrong inside, it sometimes shows as a rash on the outside. But it was frustrating to him and he felt bad for me having to wash him down twice a day and apply medicines day and night. I just told him, this is my way of showing you my love. Please don't take that away from me. The rash went away SUDDENLY as he was dying. Our primary doctor thought he must have had cancer. He did have Parkinson. But, I hated that no one could put a name on the rash. The morphine was hard for me to give him. I kept questioning did he really need it? I was fortunate that he continued to talk to me as he died. We held each other close in his hospital bed. It was the most beautiful time. I will always question whether I did the right thing. I think this is common. Especially, when we are the ones giving the drugs. I did not force him to eat as they can choke to death. That would have been horrible. I always used my bullet and ground the food into mush. I made a roast and made that mush. You know, it was SO good. I also gave him his German Beer that he asked for. If anything bothered me, it was the end. The nurse was flying around my kitchen grinding up pills and dumping the morphine. That made me nervous. As for myself, I will choose Hospice if I am given the opportunity. Guilt can come with care giving. A person's life is so precious.

My daddy was in hospice and these people were angels! When he was unable to swallow, we knew he was ready to go. His Advanced Directive was clear: no IV's, no feeding tubes, no ventilators, just palliative care. He was actively dying right at Christmas, and for Mother, who had lost her dad just a couple of days before Christmas, daddy did OK one or two IV's to keep him going so he would not die "during the holidays". We fed him morphine through a dropper, as much as he wanted as often as he wanted. He died, peacefully, at 45 minutes into the New Year. It was actually very sweet and calm. The whole family was there.
My SIL is a dr. and he is really becoming strongly in favor of doctor assisted death. He hasn't done it, of course, it's illegal, but he talks passionately about the needless suffering he sees in so many patients, who are really ready to go, but take forever to actually die.
My FIL was in the hospital the day he died, in a coma, but breathing on his own..dr asked us if he could give him "something to help him be more comfortable" and explained in detail his condition to us. The two children present said "Yes, whatever will make him more comfortable". The dr went to dad's IV line and turned his back to us. I saw him take a very full syringe out of his pocket, he injected the entire contents into the IV line, pocketed the syringe and said he'd wait on the floor, didn't think dad had much longer....within 10 minutes he was gone. I know he gave dad a huge dose of morphine. Some would call that dr assisted death..I called it an act of compassion. I think all of us wish and hope for a peaceful, "beautiful" death--with dignity. I was grateful that hospice care workers had explained to us the end of life signs....both my FIL's and dad's deaths were peaceful and calm.

Hospice ends the patient's suffering. When someone is at end-of-life stage and perhaps in horrible pain, keeping them on a ventilator, feeding tube and iv h2o just keeps the body alive... perhaps for a long time... but the patient is perhaps in a lot of pain or just isn't actually living as a person anymore, perhaps not even aware of his/her family or surroundings. So to me, I like the idea of hospice even more than legalizing the ending of someone's life. They are not starving the person to make them die. They remove the tubes and machines, add morphine so the patient doesn't feel the final agonies of dehydration, starvation, and death, and in most cases, it doesn't take very long - although it feels like an eternity to the family who loves them! Have seen this 3 times in past year or so, 2 relatives and a friend. I remember my grandmother slowly dying over two years' time, slowly wasting away - not because of medical people or hospice, but because my uncle wouldn't let anyone help or take over. The last six months I don't even believe my grammie was truly even in her body anymore. Which is good but hospice would have speeded up the process and have her last days be dignified rather than so sad and wasteful. I believe peoplle should, whenever possible, pass peacefully into death. To JoAnn29, It's not just about judging the person's pain, there is medical expertise in this. None of this is easy by any means, family caregivers are very distraught of course. But I say, let them go... let my loved one pass in peace. We can survive on a few drops of water a day in our veins. But is that living? No one calls hospice in without talking to drs and each other, and to hospice. They don't come in to starve a person who might recover. They come to help teh dying die peacefully, and to comfort the family as much as possible. That's my experience anyway.. blessings to all

I'm sorry about the emotional pain that you've been through. It's tough to watch someone we love die.

Hospice won't force a person to eat. When a person is that far into the dying process the body doesn't process food and it becomes a negative. Healthy people often feel terrible because they think that their loved one is hungry. At that point, food isn't the issue. Through studies, they've found that even hydrating does nothing for comfort and just prolongs the process.

As was mentioned, taking an action to kill is illegal. What hospice does is try to keep the person comfortable while they die a natural death. In some cases, the person going through the death process is at a point where large enough doses of morphine are needed to prevent pain that they do become uncommunicative. My thoughts there are that I'd rather have them out of pain. We can still communicate by holding their hands and talking to them.

As was mentioned, if you had a POA, you certainly could ask questions. I know that some hospice organizations are better than others. My experience was with the cream of the crop. But most are good and are willing to explain the process when asked.

Take care of yourself, now. You might want to attend the grief counseling that hospice offers for 13 months after the death of a loved one.
Carol

There is no question in MY mind that giving someone a lethal injection would be kinder. We'll be there someday, I hope, but we aren't there yet.

I am very sorry you lost your soulmate, and further, that he did not die peacefully in his sleep. We all wish for that.

People do not get put on hospice because they're getting better. We all know that. It's very difficult to accept. You've told us nothing about his condition post-stroke. Could he eat? Or was he aspirating food because he couldn't swallow properly? Did he have the pneumonia that often accompanies that condition? Could he breath on his own? What other health issues did he have?

Most of us don't understand the death process. Hospice workers do. If we don't ASK them why they"re doing what they're doing, we SURELY don't understand.

Did you ask questions?

It sounds as though your soulmate died peacefully. I think that's what all of us wish for those we love....and for ourselves. You know he was not going to get well. Sometimes we have to be careful what we heroically save someone FOR. The horrors of death unmanaged aren't for sissies.

God bless you.

Did u have medical POA. Are u sure they starved him or he wouldn't eat. I never heard of Hospice starving anyone. My Dad ate while on Hospice. Now the moriphine, not sure how they can judge somones pain when they can't express themselves. That can always be questioned by the person with mpoa.

A major line of thought in the field of ethics says the difference is between taking an action which ends a life and not taking an action and allowing nature to take its course. Legally it is generally not allowed to take an action designed to end someone's life. It is allowed, however, for someone to refuse certain kinds of treatments. These Advanced Directives provide a level of control for people who may be near the end of life and perhaps no longer have the capability to make or express their current desires. It is allowable to provide palliative care - making people comfortable and treating their pain - even if in doing so it might shorten their life.