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?
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.
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.
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.
Debbie1955
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.
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.
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.
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.
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.
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.
I am truly sorry for your negative hospice experience(s). It's not SUPPOSED to be that way.
I was a hospice nurse up until March of this year. (I didn't want to work 2 jobs.) Maybe it was that I worked for a great company, maybe my patients liked my style of nursing, maybe the families had previous experience with loved ones dying 'without' hospice and were grateful to have us. I don't know. But I never had ONE complaint from any of the patients or family members that I took care of.
MY job was 8 hour shifts in the patients home for emergency symptom relief (vomiting, pain, etc.) or respite care for the family when they were at a breaking point. Maybe that had something to do with how they perceived hospice. Often times I was the nurse at the patients last moments. To most family members, having a sleeping loved one passing on to the next realm is better than having an agitated, gasping, pain-riddled loved one departing in agony. Hence, the use of drugs to accomplish "being comfortable". They are to be used when needed. It's difficult to accomplish pain relief without having the patient fall asleep. When YOU take a narcotic pain pill I'll bet you get sleepy. That's the side effect of relieving pain.
I have since learned that all hospice companies are NOT the same. If you aren't happy with your company, talk it over with the director of nurses. If still not satisfied, CHANGE companies. Just because this is a free service covered by Medicare, doesn't mean you have to stay with the company that's been chosen. You can move from company to company.
What I found was most family members aren't "absorbing" ALL the information that is given them on the first visit. Often, they don't consult the booklet or binder with information that's left in the home either as to what the policies and procedures are. They don't call the office to ask questions. So they really have no clue as to how the system works. I understand they are grieving or in shock but someone should take the lead to understand what the game plan is. I know it's a lot to take in but do your homework. You would read the contract if you signed up with a gym, right?
I also got a lot of family and friends, who hadn't seen the dying person in a long time, come in madder than h*ll that the situation was like it was.
Please have a designated family member communicate with ALL people involved with the loved one so no one is flabbergasted at the situation. I've seen fights at the dying patients bedside and family members not knowing that the loved one was near death.
You also have the right to refuse meds (if your loved one can't say or they signal they don't want them.) There are usually "standard orders" for medication administration BUT that can change if it's not in the best judgment for the patient. Talk to the nurse, who will talk to the doctor, and the orders will be changed. I've done this.
Hospice nurses are there to make the transition from this life to the next as smooth as possible. Unfortunately things don't always go without a snag. Pick a family member who will be physically near the loved one most of the time, to be their advocate. If you don't like what's happening, SAY something. Don't wait until it's too late then say this "happened" to us. With your input, your loved ones departing will happen the way the dying person (and their family) want it to be.
Sadly after our hastened departure dropping us in a hot small apartment with no medical equipment and NONE of the proper pain control medications we then had the misfortune of being handed over to Fransican Hospice. The next 7 and 1/2 days was beyond anything I was prepared for. The lack of true compassion was shocking. Let me rephrase that... They had a lot of compassion for my husband being "dead" but none for helping him stay alive. I am interested in seeing if my post is seen, as I have learned that many have that "big brother" mentality and someone tends to be behind to clean up the messes left by those..... less caring shall I say.
Heart braking in today's world to again see that no one surpasses the bottom line $$$
I am so sorry that you miss your sweet mom and best friend.
I am also sorry that you were burned by the "chaotic medical care system" described so well by Debbie1955.
You did your best, despite the limitations of our chaotic medical care system here in the USA, and for that you should be proud.
Your light warmed me, and I know it will warm others who felt so helpless and alone, and perhaps voiceless, in regard to the care of a dying parent.
Not all people experience such difficulties, but when someone does, and no one will listen or take them seriously, it can make someone feel very alone.
i wanted to share the below paragraph that I ran across today that I believe is so true and appropriate. If one person can be saved because of my Mom's story, I am glad. Her story has been published.
You're not a victim for sharing your story,
you are a survivor setting the world on fire with your truth.
And you never know who needs your light, your warmth and raging courage.
Alex Elle
You said: [ "I feel badly for anyone who loses someone close to them and it doesn't matter how articulate they are or what their writing style is - I have compassion for others." ]
Iknowthetruth:
I agree.
Thank you for posting your thoughts, you are not alone, and you have likely helped others who may be too timid to speak up.
It also does not help that some are referring to posters as "strangers who come here to rant".
This is an open forum, not a closed club. All first time posters could be considered strangers, that does not mean they should not have a voice.
Your dad was truly lucky to have someone like you to watch out for him.
Although caregiving a parent, is tremendously stressful, you still fought to the end. Obviously you did not see coordinating his care or his desire to be alert, as an inconvenience, and you adamantly wanted to abide by his wishes.
Sadly, you are so right in all you say about the chaotic medical care issues.
Also, I have heard complaints about "at home hospice care", too.
This usually happens because sometimes adult children can not be home all day to watch what the CNA or nurse is doing or not doing. Sometimes, too, they are simply too exhausted to take notice. Also, sometimes they are not capable of understanding medical lingo or drugs, and/or they do not know how to navigate the medical system to get to the person who can make a competent decision.
The at home care system for medicare or private hire is also part of the incompetent chaotic institutional web of care available in the US.
Your dad was so lucky to have you watching over him.
Yes, you are right, whoever "rubber stamped" the Trazadone drug, under the circumstance, definitely dropped the ball. So sad. Still, it was so good that you were there to catch that ball. Good job.
I don’t want to keep going on with my sad story here, but thought a few more pieces of info could be helpful, especially about how drugs got picked and prescribed in Dad’s hospice care.
Any competent medical presciber would take into account how drugs he was already on would interact with each other. Any competent health care provider would also listen and discuss a family’s concern about a newly introduced drug.
Part of the problem had been me not knowing how their system worked. Who is in charge? The NH or Hospice? We work together was the answer I got that first day. So I thought they had it all figured out. Not!
The hospice nurse had asked for the order, but she could not approve it as a prescriber. I thought the medical director in her hospice organization must have approved it. Chain of command, right? I was definitely not sure if they were doing the right thing. As soon as the hospice provider nurse dismissed my concerns, I tried to get info off the internet, that wasn’t much help. So I kept pushing back about the Trazadone with the hospice nurse. She kept saying he was on the lowest dose possible, that he told her he didn’t sleep well, and this was to help him. He had been on 10 mg. of Celexa for years, so that was in his system. He had taken Ativan briefly a year before, so I knew that did not affect him badly. She would not order Ativan from the beginning because she said the rules about it had just changed, and her organization was trying to understand the new rules.
When he finally said that to me, about not caring, (two weeks later) then I knew it was the drug. The hospice nurse never got the opportunity to blow his concerns off.
I told him they WERE giving him something that made him not care, he had every right to refuse that drug. I made sure I was with him when the hospice nurse came in the next morning. He told her that he would not take that drug any longer.
It only took a day or two for him to bounce back to his normal self.
The nurse unit manager of the hospice floor in the NH was able to get an order for Ativan from the NH medical doctor, at a very low dose. She understood the new rules, it was not complicated at all. In fact, she was the one who responded with concern when I said I didn’t put Dad into hospice so he could become a zombie. That was the end of me giving the “benefit of the doubt” to the hospice provider nurse. As I mentioned in an earlier post, I think she had been allowed to operate in a vacuum for too long. She had the trust of her organization, and I think it was misplaced trust on her employer’s part.
After Dad died, I wanted to know who had “rubber stamped” the Trazadone drug for him. It was someone on the medical staff of the nursing home. I don’t know who, but found out that the NH policy is to have careful monitoring of that drug when given to the elderly. So somebody dropped the ball, or assumed the hospice provider nurse knew what she was doing in asking for the prescription.
Among the many challenges caregivers and family have to sort through is how different medical systems work and interface. When Dad lived at home, it was easy. He had specialists and a PCP. I coordinated his care, everyone was on the same page. He was a Success Story for his doctors.
Institutional care (hospitals, skilled rehab care, assisted living, nursing home care) introduced a level of chaos I did not expect. I used to say we have the best medical care in the world in the US. Now I say we have the best medical knowledge at our disposal, but our institutional systems often get in the way of using that knowledge.
Debbie1955
On the other hand, my mother was on hospice in a nursing home. Her medical chart indicated she had bad reactions to morphine, and it was not used for her. Somehow they got the pain managed without it. And three months later she "graduated" from hospice and lived another two years, reasonably content.
Because I had good experiences doesn't make me think there can't be any bad experiences. I do believe the bad experiences reported. Sometimes I can also see that the reporter had some pretty unrealistic expectations, but other times the experience was truly terrible, no matter what standards you use.
What I don't get is what posters are trying to accomplish when they use words like "murder" and "evil" etc. to this particular audience. Many of us, maybe most of us, have made or will face making a decision to use hospice. Giving information is one thing. Using loaded language geared to produce a guilt reaction seems unfair.
I will say, though, that when someone who has shared the caregiving journey and the struggles and the successes with us for months, and who has agonized over decisions with us, wants to vent and get very emotional about the bad hospice experience they perceive they have had, I think we are all a lot more tolerant. It is the idea of a stranger coming in here and ranting that gets us thinking about trolls.
It appears that it depends on how you write something whether or not others feel it is a valid concern and that you have the right to grieve or state your opinion.
I feel badly for anyone who loses someone close to them and it doesn't matter how articulate they are or what their writing style is - I have compassion for others.
Again, thank you Heather for your comments. You truly have compassion and care about others.
Debbie1955, I am so sorry for your loss and it appears you loved your Dad a lot and I'm sure he was pleased you were his advocate.
You said: [ "She made my life hell. I had signed the MOLST and was quite well informed. She balked at treating him for things that the MOLST agreement spelled out.
Her mode was to quickly sedate him with Trazadone after asking him at the first meeting if he was sleeping well enough.
He was withdrawn almost immediately, and the hospice nurse would not address my concerns.
After two weeks, he told me he thought they were giving him something that made him not care. I had to fight to get him Ativan, a drug he tolerated much better. He only needed .25 mg at bedtime." ]
Debbie1995:
I am so sorry you had to go through that.
These are the types of very rational concerns some people are attempting to address, here, despite some who hysterically label them as trolls or have a need to mock or belittle their thoughts on the subject.
The issues you mention are ALL legitimate concerns and need to be discussed.....honestly and openly and.... with the real version, not the sugar coated version that protects delicate egos.
I am not sure why some are in such tremendous denial about the fact that some hospice nurses, and sometimes doctors or nurse, use drugs as chemical constraints or to make their jobs easier by keeping the patient sleeping.
And, yes, sadly, without a doubt, these drugs very often hasten death.
Perhaps those people in denial feel some helplessness or doubt about their own choices regarding the person in their care.
As for what dosage of morphine or an anti-anxiety drug is a lethal dose, well that depends on the patient. That is the only rational fact that is important to consider in any medical setting regarding any drug.
For example: what other drugs is the patient taking? What is the state of the kidneys or liver?
A small dose of a pain killer or anti-anxiety drug may be relatively harmless to one patient, while being a LETHAL dose to another patient.
The real point is that NON OF THE MEDICAL PERSONNEL took into consideration what Debbie's DAD WANTED.....except for Debbie whose life was turned into hell.
Even as Debbie's dad complained that they were giving him something that made him "NOT CARE," the hospice nurse did not pay attention to his plea.
Perhaps in some cases, if the patient wants to be less cognizant, as death nears, then in that case inducing a feeling of not caring by administering a certain drug, may be a good thing, for those particular patients.
However, if the patient resists this, and wants to be cognizant and coherent to the end and is perfectly willing to bear additional pain to achieve that......, then that is the patient's choice.
Even though the patient's choice may be INCONVENIENT for the medical personnel, the patient's wishes should always take precedence.
Every person's pain tolerance is different, and some people prefer to be alert and talking and thinking for as long as possible, even if that includes, at the moment of death.
Also if the patient wants to refuse such drug in exchange for living longer, that is their choice, too.
Some may see it as clinging to life, but they are not the one dying.