I am starting a new post because the previous one on "death hastened by hospice" has so many replies. Do people expect medical euthanasia when they accept hospice? Does hospice staff aim for 24/7 sleep using sedating meds? When did this become the standard of care? When we call hospice should we be prepared to have our loved one be medicated heavily and die soon? Why is the word "comfortable" left so open to interpretation? Why is "agitated" as minor as slight tossing and turning during sleep? What has happened to hospice?
I think you offered excellent advice.
However, many people do not have children or living family members who can be their advocate.
Many people who are caring for an ailing spouse are ill themselves and when someone is ill it is very difficult to navigate the very complicated medical system.
You are apparently a good person, but not all hospice workers are.
Maybe the problems with over-medication of hospice patients are occurring in a facility setting where they can't proved 1-1 care 24 hours a day? I can see them wanting the patient to sleep more because the waking hours for very sick patients are hellishly difficult in the attempt to keep the person comfortable. Just speculating; we haven't had the issue of my mother being drugged at all.
You are *allowed* to ask questions, and if you are troubled about decisions that have been made then do.
About thirst: dying bodies do not have the same responses as you or I would do, so try not to worry so much about how your grandmother is experiencing this time. I hope your grandmother's team will be able to share more information with you and set your mind at rest. Wishing peace to you and your family.
Lets clarify one thing, a medical doctor can order hospice if he believes that the patient is terminal and has less than 6 months to live. (Medicare guidelines).
He also asks the patient or, in your grandmother's case because she has dementia, her medical Power of Attorney, if they WANT hospice services. I would take your concerns to whomever signed her up. That person can explain the terminal diagnosis grandma has and why her POA thought hospice was a good choice.
This is exactly what I have posted before. The POA who makes the decisions SHOULD share all the information with ALL family members involved with the patient to AVOID situations like this.
Please return and let us know what you found out from grandma's POA.
My sympathies to you and your family.
Some diseases can consume a life that quickly - or, even more quickly, can overwhelm a person with pain and suffering. Cancer was an incredibly painful disease for my stepmom, so she asked for medications, which, yes, made her sleep a great deal, because she preferred that to the terrible and sudden onslaught of pain. (She also begged every one of us to kill her, but in fact, she still died of plain old cancer.)
Ask questions, talk to your relative and find out why your grandmother is on hospice care. I can pretty much guarantee it's not because of mild dementia.
Edit - she can still hear your voice, by the way. Talk to her, sing to her, tell her everything you want her to know, The hearing is one of the last senses to go.
We'd had previous experience with Hospice several years ago when my dad went through a weight loss period. They told us he was dying and accused us of being in denial. We figured out he wasn't eating enough because of broken teeth, and he was taking so long at meals that facility staff took his plate before he finished. (Another resident told us.) When we started bringing him appropriate food from home, he gained 18 pounds!
Make sure your local Hospice has nurses who are responsive listeners and
are willing to engage the entire family, not just the spouse or health POA. Decide how you will treat simple infections like uti's and pneumonia. Hospice will hasten death rather than treat these--and dementia patients are especially vulnerable.
The spiritual/emotional component to my dad's Hospice care was absent. We mostly saw an eagerness on their part to start the med protocol and "make him comfortable".
Hospice made the decision about when my dad would die and I feel incredibly angry.
Debbie1955
Being immobile causes severe muscle wasting and rapidly.
Please research what happens to the human body when it is lying in bed for too long. It has been likened to smoking two packs of cigarettes per day.
Being immobile is very unhealthy and it sends the person into a musculoskeletal downward spiral that is very difficult to recover from.
Yes, I think hospice, in the USA and perhaps other countries, needs a severe overhaul.
Yes, it is easier for the staff, if a patient is drugged into mainly sleeping. There is then no need to feed them, bath them, change clothing from day clothing to pajamas, provide exercise or entertainment, etc.
All these things will without a doubt hasten death.
My mother was sleeping maybe 20 hours per day when she came home. That was without pain meds. It certainly didn't allow us to withdraw attention from her. She woke up every hour needing a sip of water, her head or legs adjusted, more blankets or less, etc. And we took those opportunities to get her into clean clothes, change her bedding, wash her, apply powder and lotion to her skin, feed her a few bites of whatever she could eat, etc.
We started giving her pain meds when she started moaning with pain. We knew she was dying - we just wanted her to be comfortable. I hope it's not true that meds are given in hospice facilities to allow staff to ignore the needs of sick patients. It certainly wasn't true when we used hospice to allow Mom to die at home.
My mom already sleeps 20-24 hours a day at home, and mostly refuses to get out of bed. She refuses to have her limbs exercised and eats barely anything. She is not allowed to take anything stronger than Tylenol because of her kidney failure, so it has nothing to do with being drugged. Her attitude did not change when she spent time in hospice for my respite break, and I don't imagine her attitude will change when she goes into full-time hospice care next week. The hospice room where she will stay also has a huge flat screen TV, DVD player, and stereo, as well as two huge windows looking out onto the garden. There is a main living area where she could cook or eat her meal in a homey dining atmosphere, or watch TV, do puzzles, play the piano, and engage in any number of other activities if she wanted to. She can have food any time of the day or night if she wants it - even if it's 3 in the morning. I can even bring the pets to visit.
I am eternally grateful for everything hospice services have provided to my family.
["Heather - I'm thinking about what happened to my mother in hospice. Her immobility was not caused by her pain medication. Her immobility was one of the first signs that she was dying. She came home from the hospital bedridden. I tried to get her up only once - she could not stand up even with me holding her up. She couldn't use the bedside commode even with help. She couldn't turn or lift herself either. Even using the bedpan was too much - she had to be catheterized."]
Carla CB:
In your case your mother was already immobile and could not even stand.
I am talking about people who are mobile, I am talking about people who are still walking and mentally alert, and who request NOT to be drugged who may not even be in much pain, but are given sleep medications. Or, who are at tolerable levels of pain and specifically request NOT to have pain meds.
The person I am caring for called me, desperate and in a panic, requesting that I take over of medical and financial POA, after her children put her in a hospice facility that was drugging her to induce sleep. She pretended to swallow the pills, so she could avoid them and stay alert.
She then contacted me. Her children were all fighting over who gets what, etc., according to her, and she did not trust them. She felt the children wanted to hasten her decline. Whether or not this is true, is not for me to decide. The children may have had good intentions, but were simply naive.
However, she clearly did not want to sleep all the time. That is why she called me.
I moved her out of hospice and into a rehab facility. That was four years ago. She is does not have dementia and walks fine.
There are some wonderful hospice facilities, but some that are not so wonderful.
Some simply obey the requests of the medical POA, particularly if a patient is difficult. Others will not and will suggest that a patient be put in rehab, if that is a better option.
The key is to be aware that some of the not so good facilities will do what is best for them and not the patient.
That is why the courts are filled with neglect lawsuits regarding such facilities. If one simply goes down to their local court house they will be able to read the horror stories.
Also many times, the workers at the not so good facilities will clean a patient up when they know the patterns of the family visits but if a hidden camera is used, the patient is not attended to at other times.
In your case, you mother was obviously declining rapidly. You and your family were there attending to her, too. So you were obviously very ALERT TO HER NEEDS.
Your mother was lucky to have you.
Actually, my friend was determined by all qualified medical professionals to be unlikely to have more than a year to live and that treatments were not working well. That is how she was admitted to palliative/hospice care.
Apparently the doctors were wrong about how long she could survive.
With rehabilitative care she is still going strong, although her illness is not curable.
She is not the type of lady that likes to be sedated. So she is willing to put up with some pain to avoid it.
She takes advantage of meditation, acupuncture, massage and other techniques to relieve pain.
Thank you for the Kudos and sending some back to you, too.
Here is a link with some information about who is accepted into hospice.
http://palliativedoctors.org/hospice/care
From the link: [ "What is Hospice Care?
There may come a time when efforts to cure or slow an illness are not working and may be more harmful than helpful. If that time comes, you should know that there's a type of palliative care—called hospice—that can help ensure your final months of life are as good and fulfilling as they can be for you and your loved ones.
Hospice is not about giving up. It's about giving you comfort, control, dignity, and quality of life.
Eligibility
Insurers, Medicare, and Medicaid will generally provide coverage for hospice care if your doctors determine you ( likely) have 6 months (a year in some cases) or less to live if your illness follows its normal course.
The AL told us that some hospice companies were better than others. We were happy with the one we went with. Sometimes I felt they communicated too often but I was always glad to get the updates. If you have any concerns or bad feelings about the hospice company you're using, switch! My mom had COPD, CHF and PAD. She was maintaining, eating, etc but she became less mobile because of her PAD - her legs wouldn't support her any longer. At the end of COPD, carbon monoxide builds up in the brain which causes the sleep/lack of consciousness. When she got to the phase, she only lived 2-3 days. The hospice nurses called me when they were afraid she would live the night. No meds had been administered. Her O2 was on max - her body simply couldn't sustain life any longer. It was peaceful - I was with her - watching each labored breath until there were no more breaths. I think her brain stopped functioning hours before her breathing stopped because of the CO. I'm glad hospice was there for us - they made her more comfortable and were very attentive.
--Suzanne
My dad had a mini stroke in November and after was on Home health care for physical therapy, a nurse and occupational therapy. They were all able to get him up walking talking he seemed fine. The doctor came in a week later and said that since he refuses the hospital she wanted to put him on in home hospice care and we could leave it at any time. Since my brother had such a great Experience with the hospice he had before he passed many years prior we thought it would be a good idea. My dad refused the hospital and usually the paramedics wouldn’t take him because he could answer all of their cognitive questions even when he had a mini stroke.
My dad passed January 14,2018 and he woke up that morning feeling sick and vomiting. I called the 24 hr emergency line 6 times between 7:45 am and 2:34 pm when he passed and a nurse never showed up. We were told over the phone only to give him Ativan and morphine which he refused saying he wasn’t in any pain he wasn’t taking that. They never told us why we should give him that nor that he was actively dying and I was never given the signs of end of life.
My fathers passing was very traumatic. He was sitting up and went unconscious but still had a pulse. As soon as he went unconscious brown fluid poured out of his mouth and nose continuously. My mother, my 26 year old daughter and I were all yelling his name and freaking out. I finally sat next to him grabbed his hand and said daddy with tears pouring down my face. At this point the fluid stopped as did his heartbeat and his head laid over on my shoulder. The nurse arrived 5 minutes after he passed. Hospice failed my dad and they failed our family. They weren’t there when we needed them most. If I would have only known he was dying I would have laid with him and comforted him, right before all this happened I was upstairs making him his favorite banana pudding thinking it would make him feel better.
I still attend grief counseling but my grief will never get better better because I am so angry about that day and the events that took place. No matter how much I try that anger won’t leave.
In her case, the hospice staff were very conservative with medications. They gave her a few tiny doses of morphine when she was having trouble breathing, but no way was it even close to euthanasia. I'm sure hospice providers vary considerably. (Personally, I want euthanasia if I get to the point where I have no quality of life. Bring it on!)
I am so sorry to hear your story. It is a common one, sadly.
I have a friend who contacted her assigned hospice workers because she felt her mother was about to die.
She was an only child and was alone with the mother. She has no medical training and was beside herself about what to do and what to expect.
The hospice nurse had not shown up that night and when called she said she could not come because she had unexpected family issues to tend to. The agency had no back up to send.
The woman died within hours. This woman is also angry and the treatment she received.
thank you. It makes me so sad to hear that this happened to your friend. It shouldn’t happen ever.
I wish they could be held accountable for not showing up at all. I feel like many people say to me “well they couldn’t have stopped him from dying” but that’s not what was needed. Guidance comfort and maybe explanations about what I was seeing would have been nice. Or taking care of him spiritually when he was still alive. I know I will harbor this anger forever. It’s sad.
Thank you, Novallentjsmom.
I agree.
Yes, it was the spiritual guidance you and my friend and the dying person all needed from a supposedly experienced and supposedly kind and caring hospice work.
After all, guidance is all they can offer, and it is for their guidance that their services are requested.
Just like you, my friend said her mother's passing was very traumatic for her to experience all alone.
Yes, the hospice agency should be held accountable for not having someone show up.
You posed the question “When is hospice euthanasia?” I can answer that easily with a single word, never. I say this with clear intent to highlight key distinctions and even basic definitions of these words.
What you really mean to ask by this is whether hospice care has mutated from the intent of care focused on patient’s concerns and needs and now can be so defined by a single word that evokes immediate shock and divides people instantly across many lines, that word being Euthanasia. Euthanasia by definition is a single specific act or direct process that brings about the humane death of a patient who finalized the decision over much time and information. It is a single moment.
Hospice is not a single moment of pre determined and mutually agreed upon means to bring death. I know there will be those with experiences they say reach that level, but just the initial conversations alone you learn of a series of services and interactions that are to take place over an unknown, but generally understood time frame.
Lets say you believe hospice literally performed a single act that brought intended death. By definition, the patient would not have consented and made an informed clear decision indicating his active participation and self intent to die. Words have meaning. And these words convey unique definitions.
Definitions aside to satisfy my need to answer the question as it was posed initially, I do understand what the question was really seeking to answer. Are they just playin’ nice and smiling with their brochures in a ruse to distract us from their ultimate goal of a quick death of Uncle Ed?
By by the time we bring a loved one to hospice we are adults. We have experienced many things, developed understandings and knowledge that only a lifetime of experience can provide. Yet, most people choose ignorance in new situations, because there is comfort in our ignorance. And it requires less of us and more of them.
Of course there here have been experiences between people, families and staff that have measured on the spectrum from ideal clear to Aunt Elda being convinced Uncle Ed was simply euthanized. I know how people interact. I know how people hear things and then twist them round and round. I know I can experience something literally next to another who witnesses all I have and yet gives an account of our shared experience in complete contrast to mine. People are wonderfully silly creatures.
So, inform and educate yourselves with decisions regarding the life and care of the final days of your loved ones IN ADVANCE of the day you ever walk through any doors or shake any hand.
I am here now beginning to become an expert in all things hospice long before I ever require that service. We know how to seek information these days, and even seek follow up resources on any topic known to man.
It is to me shocking that people choose not make time beforehand to research and freely and unencumbered know everything you need to know in preparation of the final days your sweet mother will be on earth.
People point fingers, blame, and often much prefer this path. Americans love actors and I imagine many fancy themselves on screen.
may you all persist in peace and prosperity
for your well thought out and professional statement.
I'd hope that your comment would shut down the pointless round and round that the subject of euthanasia always brings. People just argue and no one really "listens".
Having 3 members of my family being aided out of life by the kind and compassionate use of Hospice, I will always be grateful.
A friend is entering Hospice care this week after a 10 year battle with multiple health issues. She's ready and her family is ready, not saying it's going to be perfect or wonderful--but she's done with the suffering.
I, for one, am pro-hospice. I plan to take advantage of it when my time is here.