I have posted on here many times and answered questions every now and then. Dad passed away Oct 7th 2013 from Liver Cancer . He was in a hospice facility for 11 days until he died. The day before he was admitted he was in the hospital and was talking,eating and very clear headed but his ammonia levels were high and he had been very combative, not eating and wouldn't take his meds for 4 days at his nursing home. ( He was in for a Psych Evaluation.) The hospice worker talked to me about admitting him instead of returning to the nursing home. I agreed to this and arrangements were made. He was transferred later that day and was alert and in good spirits. The next morning he was unresponsive and stayed that way until he passed. They gave him morphine and ativan around the clock. He never got any water but they did cleanse his mouth and moisten it with swabs. It seemed like he could hear me the first few days because I would shake his shoulder and say "dad". His eyes seemed to be moving under his eyelids and his mouth would move slightly. I did ask about them lowering his dosages so he could wake up a little. The nurse said he was getting a very small dosage already. I just wonder if the drugs made him unresponsive and if less was used he could have ate and drank and lived longer. I know it was time for him to go but I'm kinda puzzled about his going from complete alertness and straight into unresponsiveness so quick. The nurses did a Great job. I myself don't know how they do it. They treated dad like he was their baby. So gentle and compassionate. I was just wondering if anyone else had the feeling that death felt a little rushed once their loved one was placed in Hospice.
I couldn't figure out why the hospice nurses kept asking me when my plane ticket home was. I finally found out when I begged them to finally stop her horrible pain and they knocked her out with pentobarbital. I expressed my gratitude and they said, "We would have done this last Tuesday, but I thought you still had some unfinished business." Apparently they only do euthanasias on Tuesdays.
When our pets no longer have a meaningful life, we hold them, tell them we love them, and let them go painlessly and peacefully in a matter of minutes. I'll never understand why we torture the elderly instead. It's inhumane.
Thank you to all those hospice nurses out there doing the compassionate work to minimize the torture.
"they knocked her out with pentobarbital. I expressed my gratitude and they said, 'We would have done this last Tuesday, but I thought you still had some unfinished business.' Apparently they only do euthanasias on Tuesdays."
Thanks for helping me to understand this better. Seems to me they were helping her relax and sleep, which is what pentobarbital does, right?
Fwiw, my position is that I would hope someone would ease me into death if I'm suffering and ready to go... but that has nothing to do with giving an elder a dose to minimize anxiety and help sleep... does it?
Hospice does not euthanize anyone.
What you experienced was the use of a medication to ease your mother's suffering which allowed her to pass peacefully.
The remarks about giving her the Pentobarbitol the previous Tuesday meant they were assuming you wished her to be kept alert for whatever reason, and there are many. For example, waiting for a relative to arrive, the birth of a new baby, a legal matter to be completed, tax returns to be signed, a service person to arrive from overseas.
As to the questions about your return plane ticket they were trying to remind you that it might need to be changed and the financial implications of that. None of these things are sinister, just misunderstandings between a stressed relative and a busy nurse who perhaps has poor communication skills or is totally exhausted.
Hospice nurses become very stressed at times especially when dealing with the death of someone young who is maybe going to leave young children or perhaps a tiny baby sent home to die within days of birth. There is no way you would know what else was happening with the nurse's patient load.
Many nurses burn out very quickly and leave this specialty because of the emotional stress it produces which they were far from prepared for. It is not a career path that is encouraged and other nurses seem to think that a hospice nurse has entered that field because they are too dumb to practice main stream acute nursing. This is far from the truth as a hospice nurse needs to be very experienced in many aspects of diseases and able to guide the patient and family in their correct course of action.
They are frequently the only course of communication between patient and Dr who rely on them for assessing conditions and medication requirements. Many Drs feel that loosing a patient is a failure on their part and therefor loose interest in the care. During ten years as a hospice nurse I only saw our medical director make two home visits although certain FNPs took a great interest in their dying patients and would often visit the home, but of course they were nurses before becoming FNPs.
Pentobarbitol is not a drug I ever saw used and is generally discouraged for the elderly and not a first choice for the general population these days. Barbiturates were very commonly used 50 years ago and very effective for sedation. It was standard practice to use it as a pre op sedative for children.
My own husband spent most of his career as a Dr working in the pharmaceutical industry, developing some ground breaking drugs but as far as hospice care was concerned he deffered to me although he had had experience in acute medicine and general practice.
Was it your choice that Pentobarbital be used as a sedative for your mother? Not that I am suggesting it was the wrong choice if deep sedation was required.
I am in no way suggesting that drugs given at the end of life if they are needed to ease suffering may allow the patient to die more quickly and therefor suffer less.
Euthanasia is never the objective although there are frequently enough drugs in the home for caregivers to deliberately over dose.
Chemist I am so sorry that your mother had to suffer such excruciating pain but glad the end was finally peaceful.
I've been through Hospice care with my own Mother, and am currently Caregiving for my FIL in my home on Hospice. We were lucky to have been given the option of using the same Hospice care organization as we had with Mom so many years ago, as they were tremendous, and are now working with us caring for my FIL.
They are an amazing group of Nurses, Social Workers, and aides! They have such a great way of putting my FIL at ease, and the SW is currently putting together a plan, to have my FIL honored by the Veterans of Foreign War, to acknowledge him and his Naval service to our country, she's such a Sweetie!
While they have made every medication option available to him, I've yet to see them push any medication or sedation upon him. Although when I've asked for a calming agent, so that he can rest comfortable in the afternoons and not be so agitated (so that I can get some rest too!) and at nighttime for good sleep, they haven't hesitated to make it available to him. His pain is well controlled, and should his needs increase, they told me there is much, much higher doses that he can be prescribed without worry of overdose. Again, comfort is the key. Never do they euthanize a patient, that is a Myth! Do they make patient comfortable enough to to the point of sleep, certainly, and sometimes just being relieved of the horrific pain, and made comfortable, is exactly what it takes to allow the patient to give in, let down, and let go.
Imagine yourself being in that insanely heightened and prolonged agitated feeling of severe pain, your body is naturally pumping out those "Fight or Flight" endorphins to the point that it cannot sleep, let alone relax. Now be given a nice relaxant and something for that severe pain, and ahhh, relaxed, less pain, and either sleep or hopefully even death, as when that pain control wears off, it all starts over and over again. No thank you, give me a calm and peaceful death any day!
And Chemist, I agree, dehydration in the End Stages of the dying process works wonders too! It was explained by our Mom's Hospice Dr/team that
patients incapable of drinking and swallowing enter into a state of ketosis, where the nervous system is
dulled and the patient rarely feels pain, hunger or thirst. Being dehydrated causes a feeling of welbeing, euphoria, and in this stage, the last stage, we do our best to keep our Loved Ones mouth moist and comfortable, using those spongettes. There are other routes of pain meds used at this point to keep the patient as calm and pain free as possible, either sublingual or injectable, and allow them NATURAL yet calm and painfree death.
Some states do have Death with Dignity laws (here in Washington state we do), but that is not the role of Hospice. In fact Hospice does not participate in the DWD organization. They do not admonish them, but will only come afterwards, after the DWD take care of the patients wishes and the patient has passed, to aid and assist the family in contacting the funeral home, and prepare the deceased for transport to the mortuary. I know this because I had a Nephew who went this route just this past February. He was was on Hospice, chose DWD, and ended his own suffering. The 2 agencies work separately, but in conjunction with one another, but "nary the 2 shall mix", as they say. It was a wonderful thing, but the decision was not taken lightly! A lot of discussion, planning and execution went into it. He is finally at peace.
My mom was on hospice for eight months before she passed. She had a fall three weeks before passing and hospice has dealt with these issues many, many times. They were successful at making her comfortable to ease her passing. And now, after all, she is reunited with her beloved family members (that she talked and wondered about often).
And some people need to blame someone or some thing for a death that was going to happen anyway. My sig other is one who points fingers at others whenever there was a death in his family.
This finger pointing goes on for many years. I keep telling him that that relative would be really upset if he/she knew that all you could think about regarding their whole life was the day they died and whom you want to blame..... [sigh]
Is he agitated? I believe that is what the Ativan helps with; morphine is for pain.
If you have questions, is there a 24 hour nursing line you can call?
I, too, am so sorry for you and your husband.
Yes, you are doing the right thing. These are drugs that Palliative Care and Hospice use to keep people comfortable.
If your husband is suffering from pain, Morphine will handle that. If he is agitated or having anxiety, the Ativan will help that.
A few people think that drugs shouldn't be given because it makes the person sleepy. But why would you want to have your loved one in pain or agitation when you could relieve it?
If you have a belief in a Higher Being hang on to it. Try to get some time away from care-taking to keep you going.
You sound like a caring wife. You are doing the best you can.
Please keep in touch.
So sad for you that he is only 62 but it is what it is so take good care of yourself so you can be strong enough to take care of him till the end.
Make use of all that hospice has to offer. Try and make some time for yourself and don't feel guilty about leaving him in someone else's care while you go out and have lunch with a friend, go shopping or have your hair done.
Don't concern yourself that something happens while you are out of the house. It may have been what he wanted. Many people wait till their dearest loved one is not present to pass. You might feel bad that you were not home but immediately get rid of the guilt, that is not what your husband would have wanted.
My mother passed away one afternoon after a couple she had been friends with for many years had stopped by and enjoyed a cup of tea with her. Later they said if they had known it was going to happen they would have stayed longer. The truth is she probably had no idea either as she was found by another friend shortly thereafter on the floor by the kitchen sink. I am sure she was washing the dishes that had been used for tea. She had experienced a second heart attack about a week earlier and seemed to be recovering well. So as life is unpredictible so is death.
Blessings to you and your husband.
In my sister's case, she was taken from there by another family member and by not staying with the strict health program, her pain returned in about 1 month. And by June, family members placed her in hospice.
I think she felt abandoned and experienced the same treatment...heavy dosages (enough to make her unresponsive, so much so that she didn't even know yesterday morning, that my other sister was there). I believe in the body's God given ability to eliminate toxins and with divine help and proper cleansing and nutrition, the quality of life can be dramatically improved and possibly fully healed.
I'm still in shock...I know there are nurses with compassion (my sister was an RN) but, she was realizing that with natural healing methods, divine intervention and prayer, that you can get amazing results. I live almost a 20 hour drive from her and I wonder if I was closer, if I could have convinced her to try another natural healing place, especially since she saw some amazing, miraculous results...I feel that being in hospice care rushed her death along too...
I feel and can relate to your pain.
So no, they are not rushing anything. We are letting her down easy as though she has a parachute. And we had a long conversation yesterday about our wishes.
I love the imagery of "letting (mom) down easy like she has a parachute." Happy landings to your mom!
My FIL is doing well on Hospice in my home. He loves all "his girls", and they make a fuss over him.
We are keeping him comfortable and now he is even asking for the medications, something that I thought he would never do, Stuborn Norwegian! Lol!
He's got plenty of visitors in our kids, my sisters, the Hospice team, and every day is busy, and we are pooped out at the end of every day.
He is beginning to sleep much more during the day, and is eating less and less, and the Nurses say to not force him to eat if he doesn't want to.
This is a very difficult journey, but it's our job to make it as peaceful and comfortable as possible, and that's what we are doing.
Thankfully it's a quiet day today, so we are ALL resting up!
Take care Barbara, and God speed to your lovely Mam!
I'm so sorry about your sister.
I, too, believe in the power of prayer. My husband was saved from death (pneumonia) by prayer and God's mercy. His chance of surviving was only 10%!
I also believe health can be restored in many cases with a drastic change in diet and the additions of vitamins and minerals. My grandma survived many more years by doing just that.
However, Stage 4 breast cancer is practically impossible to survive. According to the website Healthline;
"The American Cancer Society (ACS) states that the five-year survival rate after diagnosis for people with stage 4 breast cancer is 22 percent.
This percentage is considerably lower than at earlier stages. At stage 3, the five-year relative survival rate is 72 percent. At stage 2, it’s over 90 percent."
I'm sorry to say that, (in my humble opinion and 38 years of nursing), I don't think juicing would be effective in riding metastatic cancer (cancer that has spread to others areas or organs) from the body. I understand trying everything and, sometimes it seems to work but, as time goes on, (as you said she was there 'several months before') the patient declines in health as the cancer advances.
In my opinion, a terminal patient should NEVER be in pain. You can titrate the dosage to fit their needs but they should always be comfortable as they journey to the next realm.
Her death was inevitable but at least she was comfortable. Hospice did not kill your sister, she died of cancer in a comfortable state. Be grateful she wasn't writhing in pain , as I have seen others go.
Have you changed your email address?
Do you check the board on someone else's phone?
Contact the administrator. (I don't know how to do that). Look on the main page. I think it's supposed to be an automatic 'subscription' to the thread you've posted on.
I know I wait for notifications and I don't seem to get as many as I've replied to.
Good luck.
She was unhappy, depressed and sometimes just miserable. She was never that kind of person when she was healthy - she was an RN, worked out, held exercise classes for elderly folks at centers, ate well and thrived.
Cancer changed that. She continued to eat well when she could tolerate food. Our family has grown our own food for years, when we could. I am a staunch supporter of natural remedies myself. But cancer is more powerful than we are.
In my limited experience, it's not unusual to experience an abatement in pain or other symptoms. But that doesn't mean that the cancer has been cured; my sister experienced several periods of more healthy conditions, but the cancer always returned, aggressively.
I think those of us who survive someone who's died of cancer can never really know how much that person may have suffered, and that's certainly no reflection on the compassion and emotion you've expressed her.
People just don't always express their pain. My sister didn't; my father doesn't. I know also that both of them didn't want to burden their living relatives and withheld detail on their agonies.
Your sister might have felt that, and as a nurse, I suspect she knew what was happening before the family did.
Our bodies aren't strong enough to eliminate some toxins, nor are they strong enough to spontaneously cure some of the disastrous diseases that have manifested themselves through time.
Remember as well that some of these diseases are man made, through insecticide and chemical contamination of food, water, cosmetics, the environment...bodies haven't developed immunity to some of the devastating diseases people have created or contributed to.
Your faith and love for your sister are touching. I recall that I felt that way when my sister died. But over the years I realize how many clues I missed, and most of all, I remember the agony of her last months.
In retrospect, I wish I had had more insight and could have gotten her into a hospice program sooner. By the time the cancer had spread through her entire body, it was time for relief. Her last days were miserable. I wish in retrospect I had the insight to realize that and authorize hospice sooner, and alleviate her misery.
I hope this helps you as you reflect on her life and her legacy, moving from "if only" to being glad that's she no longer suffering.
The way hospice worked at the NH, once mom was "on" was that they were our instant response system. They were able to fix what was wrong immediately, because they were working for mom and not for the NH. I think the last two years of slow decline would have been exactly the same, except we would have had a better response system in place. That's MY two cents.
You have to be medically eligible for hospice, i.e., have a life limiting illness.
Would you have really wanted to see medical staff pushing on Mom's chest and breaking ribs or giving electric shocks and pushing a tube down her throat.
As far as your sister's actions are concerned they are clearly illegal and the only way to deal with them is through the legal system if you feel it is worth it.
It has been said many times on this thread that the purpose of hospice is to give a patient a comfortable and anti anxiety death. Drugs are fequently required to achieve this end It is not in the interests of hospice to kill off their patients.
Once a patient has passed the hospice looses vital income.
You are grieving the loss of your mother and looking for aomeone to blame for something that no one had any control over so try and find peace for yourself.
I hope that you find peace.
This is not a "free-for-all" for whatever the doctors and nurses want to do. Patient's charts are audited by the state and, if not found in compliance, the state can close them down. One of the largest hospices in San Diego, California, with hundreds of patients, was shut down a couple of years ago.
Go talk to your mom's doctor for the diagnosis he gave the hospice and ask him to explain his actions to you. Then go speak with the hospice director. Bring your medical records with you. I'm sure you will be given more records that will substantiate her admittance into hospice.
Dig for your answers and you will get them. But please stop blaming the nurses for killing your mother. You don't know ALL the facts.