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.
My mom is in stage 6 and is eating, sleeping and talking (albeit, confused) very well. Slight urine incontinence (not bad for 94) and uses "pull ups" but can tinkle in the bathroom too. She's been in stage 6 for the past year or so.
Maybe your mom just had a dip in her health and regained strength with the extra medical attention (?)
Check out Alz.org for the list of Alzheimer's stages. Good luck.
I think that most hospice organizations use some volunteers. The nurses and doctors and social workers and chaplain are paid, but there are other roles that are staffed by volunteers. For my mother the volunteers just spent time with her, talking about her interests, doing her nails, etc. For my husband I passed on the volunteer because I had a PCA and thought the volunteers should be used with caregivers who had no help. I can't imagine why any hospice program would be all volunteer, when there is insurance money (Medicare) to pay for most of the program. Are you sure the hospice in Idaho was all-volunteer? If so, why?
Both of my hospice experiences were in the Twin Cities and they were excellent. Which is not to say all TC hospice programs are excellent, but I know that some are! I have a young friend who provides musical experiences to hospice clients. She plays instruments and/or sings. She is not a volunteer. This is what she does for a living.
I am really very glad that you will review the forensic toxicology labs. That should either set you mind at ease, or give you the basis for further action. If this Minneapolis hospice program acted as you suspect they did, that needs to come to light and changes made.
BTW, were you in Minneapolis with your mother, or dealing with this from Idaho?
The option of cancelling hospice is (or should be) completely explained when you sign up. To sign up with hospice, the patient is agreeing that they do not want any interventions in the dying process. IF the patient and family doesn't agree with that, then hospice won't sign you on. You are "allowed" to go to the hospital for comfort measures (for example, the patient fell and broke their leg. That is painful. They can go to the hospital to set/cast it, etc.). That is not considered "prolonging" life.
Hospice is for patients that are considered terminal and will die within 6 months.
I was a private duty nurse for a patient in his home (NOT hospice). He was 92, extremely weak and emaciated, chronic diarrhea and had a few other non life threatening illnesses. He wanted to die. He did not want any intervention. He signed onto hospice. When he fainted on the commode, I had to call paramedics to help me get him up. THEY took him to the hospital due to his blood pressure bottoming out. (Obviously, at that time, he couldn't speak for himself.) He was discharged from hospice because they took him to the hospital for "life-saving treatment ". When he came home, he was readmitted to hospice.
You can cancel hospice anytime and for any reason. I can only speak from my nursing experience working with one hospice company in Southern California but I can't imagine that all the others operate much differently.
In the end stage of dying, the circulation slows/shuts down, affecting the extremities first,(lower legs and hands), often turning them a crimson or purple color. They are cold to touch due to lack of blood flow. The process is called mottling. Occasionally, with light mottling, simply repositioning or massaging the extremities will bring back the normal skin color or lessen the appearance of darkness. With severe mottling, it does not resolve and death will be following soon after.
Was the hospital able to reverse the black color and restore circulation to your mom's legs and hand?
My condolences on your mother's passing. As a hospice (crisis care) nurse in the patient's home, I know that there are criteria that have to be met (set by the government) in order to sign up with hospice. Your mom was in a nursing home, so I'm assuming there was some deficit where she needed more care than she or you could provide. You say the nursing home suggested hospice to "provide some help (what type of help?) and spiritual support in the next year". Were you looking for the diapers, Chux, and other items that are a free service? Your family is Catholic, so I'm not sure why spiritual support from hospice would be needed. A parish priest or deacon are usually able to visit the sick at a moments notice.
What "real medical interventions" weren't working....what was her condition?
Was your mom eating and drinking well before hospice?
I'm sorry, I have to correct you when you say "hospice does have literally permission to kill with meds." Most hospices have "standard orders" that cover most conditions (nausea, temperature, pain, agitation, etc.) The meds are given after assessing the patient's signs and symptoms.
All hospices explain the entire enrollment procedure and operating procedures. Were you in attendance? You always have the right for input or denying any meds you don't want for her. Were you supervising her meds during those 2 weeks?
Your mother was very advanced in age and was well within the age range to pass away.
It seems your sister was either realistic that your mom would be passing soon or actually wanted her gone. Even if that was the case, there would have been no way a nurse could "kill" your mother. There seems to be gaps in the story.
I hope you can come to grips at a later date that your mother didn't suffer and probably would have passed within a couple of years with no interventions. Given your bias, please don't recommend hospice to any of your patients. At least we, the nurses, won't be deemed "murderers", when we relieve any pain or anxiety we observe.
My husband is also an MD and saved my life several times when I was close to death by questioning the treatment I was or not getting in a hospital A good example was being asked to sign a DNR on my way into surgery for a burst appendix. I politely declined and was then asked "Well how much do you want us to do." I was then told I would probably wake up intubated and have to keep the tube in for a couple of days. Some people are so insensitive it bogles the mind. Forgive yourself you did the best you could. Blessings.
That said, I had a patient with brain injury who was "euthanized" in this way against what we all wanted as rehab people, and I know it is very hard not to come across as too pushy and demanding with your fellow professionals, and yet you end up regretting not being more forceful when you turn out to have been right about something.
Why did you allow this to happen with your knowledge of medication?
As you know nurses are only allowed to administer what is prescribed it should have been possible for you to question the Dr doing the ordering
I realize that you are hurting and angry at the way your mother died and feel the blame should be laid somewhere.
Hospice can not admit a patient without a terminal diagnosis.
You certainly can request a private autopsy. Not usual in hospice but I personally have arranged one for a family which of course they had to pay for.
I absolutely agree that unessassary high levels of sedation are unacceptable but as you know what may be reasonable for someone younger may be too much for the very elderly
When your initial grief has subsided I hope you will be able to think about this more clearly and if you still feel it to be a wrongful death make sure those responsible are properly identified.
I repeat what I have said many times before "Hospice nurses are not licensed to kill" Again please accept my sincere condolences
What now? I said I'd try to be more sensitive, to others. If what I post is a help, where's the harm? Isn't that what this site is about?"
I'm sorry about your mom. Maybe, they felt sleeping was best for her so she would not be awake and in pain.
I'm glad your father is a rare survivor of sepsis.
I understand and it would be nice if others here it was patients over profits, when dealing with medical folks. My experience was vastly different, and very true. All told with expenses the hospital alone made over $250,000. The room, alone, was a little over $2100 per day.
No biggie in mistaken me for a woman.
As for calling hospice nurses,"murderers" that was not the case with my mom. She was already dead before hospice got involved. The only one involved was hospice doc. The ICU nurses did all monitoring of vitals, giving of any medicines,etc. The NH PCP, even bowed out, and sent his NP when they disconnected life support.
Been a while since I've been here. Thank you for your posts and condolences. I'll try to be more sensitive to others, but my experience (though probably different than most here) with my mom, was truthfully based on economics. From hospital to limited hospice, it really was about the money. This has been the point of my posts to other members;when it all boils down to it, it really is about the money.
Thus the patient will pass in a day or two, so to the family it feels like Hospice had placed a "rush order" on this patient.... which isn't true. Hospice came in to help with pain management, nothing more.
I wish we could stop this myth/conspiracy that Hospice causes the death of a patient.
Nurses can't give any medicine not ordered by a doctor. The medication must be given exactly as it is written by the doctor, the milligram strength, the frequency (how often), the route (oral, injectable), etc.
I worked in hospitals 27 out of 37 years as a nurse. I have given Morphine to dying patients but ONLY with a doctor's order and giving it only how it was ordered.
Have those who have had bad experiences with hospice ever witnessed any other people dying? Do you know that dying people can be alert one day and dead the next, even without any medications? Do you know that they can be so agitated, near the end, that they can fall out of bed? Do you know what intractable pain is?
Death is complex and each person enters and goes through their stages in their own way.
But, since so many of you believe that Hospice has taken the life of your loved one, let's lobby to make Hospice illegal. The burden of caring for the complex needs of the dying patient would fall back upon the patients doctor and the family. Then the "killer nurses" would be gone. If you're lucky and can get enough signatures, you might get it on the ballot for the next election.
At the point when you are out of YOUR mind trying to care and comfort your loved one, who might also be out of his/her mind, remember that there was once an institution that tried to make your loved ones comfortable in their last days.
I had to come back though to make sure that I clarify something important: I'm not implying that anyone's anguish over your Loved One makes you "crazy" in any way. I was only speaking to my experience with both my mother and my father not trusting the decisions of medical staff when those decisions were for the best of the patient. I know your concern and love is very much valid. Please interpret what I wrote in the loving spirit it was intended.
Here's the thing: different family or people perceive/understand medical comfort care differently.
Example: my father had severe sepsis in Oct 2014. I was caring for him at home and he couldn't swallow and stopped producing urine. I knew he was going to die if I didn't get him into the hospital. I called 911 and the EMTs assessed that he was able to refuse treatment even though he was clearly in serious medical trouble and would die w/o treatment.
There's more to this story - but there's 1 example where the patient doesn't understand what is best for them, even though it should have been OBVIOUS... but it wasn't and there was nothing I could do that night as I called in other family members to come help me prevent my father's death.
My mother drives up, thankfully, and she helps me to convince my father to go into the hospital. We take him in and get him admitted in the evening. I know, at that point, that he is exactly where he needs to be, and I go home and get some rest and am comforted knowing my dad is exactly where he should be. My mother stays at the hospital and hounds the nurses and staff all night, demanding they remove the embedded catheter that was the cause of the sepsis. I KNOW that general overnight staff can't do that. They needed a specialist to assess my father's situation and remove the catheter w/o creating further damage. My mother perceived that they aren't doing their jobs and she is only exhausting herself and getting herself worked up unnecessarily by demanding something that's not in the best interest of my father's care.
In the end, the specialist was called in, and it took about 6 hours after being admitted to remove the embedded cath -- not a time period that put him in any extra danger, and it was necessary to do the best removal.
But that wasn't the end of my mother's accusations of medical mistreatment.
They gave my father on IV fluids and antibiotics and did everything to clear up the sepsis and hydrate him... but they couldn't give him solid foods or even thickened liquids because his ability to swallow was so compromised.
I know that my dad is through the worst, and that these medical pros will figure out a way to get my dad better. They performed lots of scans and had therapists and different things to assess how best to treat him. Meantime, my mother is DEMANDING they feed my father, and my father - instead of resting - is getting caught up in my mother's drama, and now he's crying for food, and asking me to bring him food. I know he'll be ok w/o food for a bit, and that his hunger isn't even close to the biggest medical problem, but my between my "crazy" mom and "crazy" dad... the 2 of them were driving me to tears, and I had to leave the hospital. I couldn't reason with my mother. She knew best, not the trained med pros. They were starving him, she was sure of it.
The good news is my father fully recovered, as I trusted he would, but it took time. And my mother's incorrect interpretation of what the trained staff was doing just made things horrible for me and much harder than need be for my dad.
Death is inevitable and everyone/anyone can have a different opinion about the physical/mental state of a Loved One/patient at any given time. No legislation will change that.
I see so many different experiences voiced in this thread: "hospice killed my Loved One with too many meds." - vs - "Hospice let my Loved One suffer horribly and didn't administer enough pain/sedative meds." - vs - "Thank god there was someone there to help, because this is just an extremely difficult time no matter what, and I didn't know what to do."
There's no legislation that can help, imo, but educating yourself and communicating with staff is good. If you feel that medical staff is unsupportive of your Loved One's needs or family desires, get a 2nd opinion from other impartial medical personnel.
And, if you're interested, you can look up the sad case of Dr. Hootan C. Roozrokh and Ruben Navarro. A doctor with an impeccable record had criminal charges pressed against him (later dropped) because a nurse said "something didn't seem right" about how much morphine Dr. Roozrokh administered to the terminally ill, braindead, and chronically morphine-tolerant Navarro. Navarro's mother, due to a non-scientific allegation leveled against the doc, is now left believing that her long brain dead son was not treated with dignity at the time of his passing. Ridiculous and sad that an under qualified medical person could strip a prodigy doc's career based on allegation.
End of Life is a time that brings out the best and worst in some people. It's usually very stressful, no matter what, and suffering is inevitable for some and so incredibly difficult to witness. I'd much rather my LO or myself is sedated thoroughly and I don't care if it hastens my impending demise.