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.
What you posted about Hospice was definitely not how it went for my mom. My experience, no meeting with nurses, or hospice team. Just a call from ICU head, subtly suggesting life support be ended. He used her age, what her body was going through with meds, how religious he is, etc. Hospital made decisions that best suited their needs instead of the patient or family.
It's been 6 mths since she has passed. Since that time, no communication from hospital, Hospice, or "concerned" doctors. In a weird way, it is a blessing, since hearing from them would be hypocritical.
About 5 months post treatment, Mom's bones started breaking apart from the metastatic cancer, she was treated in the ER for intractable pain, multiple pelvic fractures, admitted, and a couple of days later, sent home to my sister's home on Hospice care, and a
PIC Line, for IV Morphine, she would have for pain, until the very end.
Thankfully, I worked as a Medical Assistant, and had a Little clue as to what was to come, but you are Right, you are overwhelmed at first, hit with the thought that you will be losing your Mom, probably within 6 months. Meeting the Hospice team, setting up a rotation of siblings (now Caregivers), the Hospice aides, bathI got aides, clergy, and other caregivers, so my eldest sister wouldn't get completely burned out, and finding a Grove. It is Overwhelming at best!
Our Mom was on Hospice for 5 months, so we had an adjustment period, but Many People, Many Families Don't anywhere near that amount of time.
Having a LO come home on Hospice care, only to pass within days or weeks, is Extremely Stressful! Then Realizing, and Understand that You may need to The One who must Administer such Powerful Medications, at the Most stressful times, when your Loved one is struggling and panicking, well, it's Not for Everyone!
However, EVERY family who does Accept and Admits their Loved One into the Hospice program does have a meeting with the Nurse, the Social Worker, and had the opportunity to ask questions. They are also given written materials for review.
The medication potentials are discussed, as in my understanding, every patient receives an Emergency Medication kit, and the patients LO's are supposed to know it's use and be able to administer it. The Nurses are Always a phone call away, 24/7! Believe Me, you are calling them Constantly!
All the medications are Rx's by the Hospice Dr's, and the Nurses are to administer it AS WRITTEN. Never do the "up the dosage", willy-nilly, or as they see fit. The Nurses work within the confines of their Licence, or they would Lose that Licence. All medications are Charted, and strictly monitored! Many times, it is the Primary Caregiver and other Family members who are dispensing the medications! Often hard core Narcotics. Remember, Hospice Nurese ARE NOT there with you (for the At-Home Patient) all the time, or even every day! But are always available by phone, 24/7.
People who are admitted to Hospice Care normally know, that they are Nearing the End of their Life, or the Healthcare POA does, and is acting on their behalf.
Hospice is for Comfort Care, a humane and as Pain-Free, and Stress-free time until death, as can possibly be made for the patient, by the Hospice team. You (as a Caregiver), Are Part of the Hospice Team!
Our Mom went to the Hospice Hospital, the last 8 days of her life. The Nurses were able to see signs and symptoms that We, her Children could not see. Her frail, sick body was shutting down. She had some mental decline as well, that we did not see. Sometimes, the family Caregivers are "Too Close", and not seeing subtle changes, that the Nurses do see in their examinations, so as recommended, our Mom went In-patient.
It was definitely for the best, as in our large family, there was 16 Grandchildren, and 3 Great-Grandchildren involved in our situation. It was near the end, our Mom was Atively Dying, and it was felt it might be too traumatic for the younger children, to have Mom die in my sisters, and my Mom wholeheartedly agreed. She was the Ultimate Mother and Grandmother, who Loved her whole family and everyone, including her Hospice team!
Hospice is about the Whole family, not only the Patient. The Hospice Hospital was amazing to her, as well as our family. Our Mom passed away Peacefully, with all 6 kids holding onto her, and onto one another.
Hospice IS NOT for everyone, OR every family. There are a LOT OF MOVING PARTS!
Please, know what you are getting into, and ask a lot of questions! It takes a village! Literally!
Yup, you're right. It does get tiring telling people that we aren't killing their loved ones. It's a matter of the family being under-informed. We could have possibly missed giving some information upon admission. However it's common that the family members can't process all the information they are given, due to their anxiety and grief. The process IS explained to them (whoever is there) but, often you have more family appearing (who haven't been informed) and they pitch a fit. I can't tell you how many times I have encountered this. Just last week I was asked by a grandson when grandma was going to sit up and eat again!! It was a breakdown of FAMILY communication that caused this. I tactfully attempted to spell out reality-with all his aunts and uncles (the dying patients children) watching!! Shouldn't THEY have prepared him before he got to his grandmother's room?
So thank you for cheering us on. We're only trying to help make the transition a comfortable one. It's good to hear that you had a positive experience.
The pneumonia is not a direct result of taking Morphine but Morphine does slow breathing. During the dying process, patients accumulate secretions (mucous) and can not clear them. If the mucous is close enough to the throat to suction out, the hospice nurse can do that. Patients may attempt a cough but, as the body is preparing to stop functioning (die), the secretions collect in the bronchus, creating a heavyly congested sound-referred to by some as a "death rattle". In the hospice I work for, our doctors prescribe Levsin, a drug to dry up the mucous, to make the patient more comfortable.
Other meds we use are Tlyenol for fever and meds for constipation. These are all for the patient's comfort.
I like the way you spelled it out so nicely, that Hospice Nurses do not give enormous amounts of Narcotics and kill people, nor Ever administration more, then the Dr prescribed!
You were clear, consice, and very considerate! It must be very difficult to always have to defend your talent, your vocation, unfortunately, people who are grieving, sometimes need to blame somebody, when they lose their LO's, even when acutely ill, and death is imminent. Unfortunately they hear the word Narcotics, and based on the bad press in the news, wish to blame the use of these, when used in the Right context. I know that many other Nurses on this one and simular threads on here, have done the same, but people don't want to hear the truth, plus, people are just plain scared, scared of their LO passing, and they themselves being in charge of these types of medications, especially at the very last panicking moments, it is extremely scary, So I can understand their reluctance to wish to administer them. It's a sad and scary time, but they shouldn't be blaming the Hospice for trying to eases their LO's pain, anxiety and suffering.
But good description, great educational information, and THANK YOU, for all you do as a Hospice Nurse! It takes someone extremely Special, to be able to work as a Hospice Nurse, and not everyone can do it.
I'm very sorry for the loss of you dad. My heartfelt sympathies to all your family members.
I'm a hospice nurse. From your very accurate description of your father's conditions, he was a seriously ill man. Patients do not recover from these conditions and his diabetes added to the problem. The swollen abdomen from the cirrhosis and acities can cause great pain and discomfort. Draining off the fluid from the abdomen is also uncomfortable but does provide temporary relief. The fluid returns and it is a continous cycle to keep the patient comfortable.
I need you to know that hospice nurses keep the pain and anxiety medications in the same room as the patient. That's a common practice. Morphine (a narcotic used to treat pain and/or labored breathing) is ordered in specific doses by the hospice Doctor. The same with Ativan (an anti-anxiety medication). A nurse CAN'T give more than what is ordered by the doctor. We have a system for accounting for each dose of medication that is given and it is double checked with another nurse at the beginning and end of every shift. If it isn't correct, there would be all kinds of investigations to find out why there is a discrepancy. We can't just give as many pills or liquid as want to the patient. We are not there to kill your family member!! We are there to watch for symptoms your dying loved one is experiencing as pain or anxiety. We use our observations of patients grimacing, frowning, moaning, rocking, rubbing an area, repositioning, gritting teeth, flailing arms and legs, hollering out, making fists, or we ask them (if the patient can answer) to guide us to know how uncomfortable they are. We try to keep these symptoms at a minimum or absent altogether. Our mission is to have the patient be comfortable so they can rest and be relaxed. A struggling death is a horrible sight.
The amount of medication given per hour is not enough to take someone's life. Yes, they may be in a deep rest but they cannot die from the quantity of meds given. I used to work the surgical floor in 2 hospitals and have I've given more morphine to post-op (post surgical) patients coming right out of surgery than I give to hospice patients. I'm sorry your dad had to go ER and receive Narcan
(a narcotic antagonist that reverses any effect of the narcotic) to then suffer pain again since he passed within a few hours. Too bad that he couldn't have been more comfortable. That's what hospice is all about.
I'm sorry you feel we are to blame for your father's death. As you can see, it was imminent even without our interference.
FYI, a dose of 200 mg. or more is needed to kill someone. 'Typically' hospice doctors order 7.5 mg. to 15 mg. every 4 hours with the same amounts that can be given every hour for "breakthrough" pain (pain that wasn't taken care of by the initial dose) if needed. Can you see how these doses don't come close to killing anyone?
Many people want to blame someone or something for taking their loved one. It was just his time to go and I'm sorry. I lost my dad too so I know your heartache. Be comforted that your father is no longer suffering in a malfunctioning body that was causing him great discomfort.
Everyone wants their loved ones to live as long as possible and the death triggers the normal stages of grieving which involve disbelief and anger.
It is clear from your post that your father was already in the final stages of his life and your actions were very understandable. His condition when he was awake and aware would have been distressing to him and for you to continue to watch.
You and your brother did what you felt was right at the time and you are perfectly correct in wanting to find the facts.
I would suggest you write down what you have told us and everything else the family observed. Your mother can obtain a copy of his hospital and skilled care facility record which will include the nurses notes and medication orders.
It is usual in a nursing facility for that facility's MD to take over the care of the residents there and write the orders. In the case of hospice patient's the hospice MD may or may not be involved.
Once again I will stress that no nurse can give a medication that has not been ordered by an MD, FNP or PA. it is illegal they would loose their licenses by doing that.
Hospice never deliberately causes a patient's death. That would be murder. They may however find it necessary to give drugs to control certain symptoms like pain and anxiety which can lead to excessive sedation, unresponsiveness and lead to pneumonia which may be fatal. most families want to see their loved ones pain free and calm in their final hours.
At this time try and concentrate on laying your father to rest and grieving his death.
It is very difficult to loose a parent or spouse. After things are calmer in a few weeks revisit your concerns and it will then be clear to you if they are justified and what if any action you wish to take. Be aware though that revisiting this time will again be very painful so some grief counciing may be helpful. Hospice does offer this service for 13 months after a loved ones death and may be individual or group or both depending on your needs.
You should certainly check the dosage of morphine that was scripted by the hospice physician; the nurses could only administer what was ordered by the physician.
Again, I'm so very sorry that you've lost your dad.
It's my understanding that a normal dose of morphine is between 5 and 20 mg every 2 to 4 hours. For morphine to to speed up death, each dose would be over 200 mg. No doctor would order such an extremely high dosage.
My Dad was sick with pneumonia and was doing poorly at the hospital, once back at Assisted Living he perked up, was chatty, but couldn't eat due to aspiration [food/water going into his lungs], he was on Hospice.... I thought this was a great turn around for him.... but he passed in the wee hours of the morning much to everyone's surprise. He went peacefully.
The burst of energy is common in many people who are ill... they all of the sudden become chatty, want to eat, start looking bright and attentive, that can last for a day or for a week. Then the next day they are taking their final breathes, with or without morphine. Morphine is a comfort drug to help lessen any pain the patient might have.
I think what happens is a patient has been over mediated for so long that when they are taken off of the vast majority of their prescription meds as per Hospice, they actually start feeling better.
My Dad passed a couple of months ago, it was sudden. This time it turned out that when he tried to eat or drink the food/liquid was going into his lungs and he developed an infection then pneumonia. Being he was 95, there wasn't a whole lot the doctors could do.
My Dad had an "Advance Medical Directive" regarding medical care drawn up by his Elder Law Attorney. I used that as my guideline, what steps to take and if he wanted Hospice. Dad passed very peacefully.
My father died suddenly, he just walked into the den and dropped dead. None of the six children knew it until I called them. He was suffering but at home. On the other hand, my mother died in hospice from cancer. That was an ugly way to die. I will say she was a fighter, hard headed but stayed at home until 5 days before her death. That was hard on the family because someone had to be with her 24/7.
After her death, I sat down and wrote out what I wanted, sealed it in an envelope then gave a copy to my wife and one to my only daughter.
I want it to be simple, cremation, spread my ashes near my favorite forest. If they want to celebrate my life I wrote down my thoughts and said what I wanted to say to the people who may come. I have seen too many deaths in my life, but I realize my time is coming. Just let me die with dignity.
Until that day comes I'll take it one day at a time, I don't worry about yesterday or tomorrow. I want my life to be a celebration, not a burden on my family.
I'm sorry for your loss.
You did the best you could for your mom. Depending on her age, the hospital doctors probably thought it best not to submit her to any more treatments. That is what hospitals do.
Your Mom would have passed on the same timetable with or without Hospice. Without Hospice it would have been an extremely painful death. With Hospice she was to pass being comfortable and in peace. So think about this, you made the right choice having your Mother be in Hospice.