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.
Todays RNs are encouraged to take a four year degree but once they are responsible for direct patient care have no practical experience. One RN came to change an IV for me supervised by another isa year RN. It all went fine and I encouraged her but afterwards I asked her if they were taught in nursing school and were able to do this on real patients supervised by a tutor. She said they were taught in schools but had no real life experience. That is a big gripe i have about todays new RNs, their hands on training comes from their peers so bad habits and incorrect information are passed along with no check until something tragic happens. I witnessed this time and time again last Fall in my 3 months hospitalization and either I or my husband had to intervene
If you keep an IV in for any length of time the site needs to be changed every few days causing more distress.
Also agree with CM it is the job of the Dr to explain the option to the relatives so they can make an informed decision.
Now there are occasions when it could be essential to prolong someone's life to achieve a certain goal. Most often it is for family reasons like the birth of a baby or to see a serviceman/woman return from battle. This is usually the patient's choice and deserves medical support.
Dehydration in itself is not painful but feeling thirsty with a dry mouth is very unpleasant. (personal experience here) my teeth felt as though they were wearing sweaters!! Good mouth care is essential and allowing the patient to suck on a swab if they can't drink is good or dripping a few drops of water in the mouth by holding a finger over the top of a straw also helps plus minute ice chips. Of course most people don't have fancy crushed ice makers but just put a few ice cubes in a clean tea towel and hit it against a hard surface and voila you have crushed ice.
And any doctor who fails to assert his clinical judgment purely on the grounds that a relative asks him nicely wants taking out and spanking. If that so-and-so knew what would happen and thought it too difficult to explain his thinking to you, he ought not to be practising in palliative care.
But to sweep Hospice with such a huge brush is so very unfair.
At this point it is the ROLE OF A DOCTOR NOT A HOSPICE NURSE OR ADMINISTRATOR to meet with the relatives and explain exactly what is happening internally to the loved one in a language they can understand. The reason I say this is because only a doctor can KNOW the intricacies of medical diagnostics that lead them to believe that the route they are taking is the correct route and therefore they are the ONLY ones who should answer the questions
Back in the day the doctor explained to me there were very few options and no good ones
They could continue to drip, drain and administer morphine - the death would be long drawn out and painful
They could remove drip but that would require an increase in morphine and he would die sooner but not in pain
They could remove all medical treatment and he would die sooner but in agony
Tell me which would you have chosen for that was the call I had to make
The questions are: how do we tell if the hospice is a good one? We're already sad and emotional and/or upset at that time.
What other options do we have if we don't think they're ready for hospice?
How do we make sure we understand as much as possible how this is going to work in our loved one's case?
My mither's in the hospital with a wicked Urinary Tract Infection. She hasn't been eating or drinking but its gotten better. Last week the doctor told me we could send her to a psychiatric hospital, try inserting a feeding tube, or put her in a hospice program. A psychiatridt visited and said they could administer her antidepressant and anxiety meds via iv-something her hospital doc said couldn't be done. Psychiatrist said she was severely depressed and gave her a shot of B-12 and Vitamin D. She woke up and recognized my brother and asked him about his wife. Medical care is an uncertain thing. I think people are writing to this thread because they have felt helpless, sad, angry, and confused about their experience. This thread helped me feel a little less crazy about my horrible experience with hospice and my brother. I'm not saying get rid of hospice. I'm saying something's wrong or missing. Why can't we stop attacking each other and try to figure a way to make it better?
Dad and I noticed that the medical professionals and family members spoke as if mom wasn't there. I remember dad constantly shaking his head hard and telling them to stop saying those things because mom can hear them. I learned from dad that just because mom cannot move or respond, that she can still hear and maybe comprehend.
One home care nurse came to our house to put an IV on me. I couldn't believe that when she entered and saw my bedridden mom, her exact words were: "You're still alive! I haven't seen you in years! You're still alive!" Ahem...she was part of mom's hospice team. Dad refused the meds and called 911 whenever mom had a medical crisis... Hence the stomach tube....and then the 24/7 oxygen....and then the tracheal tube...and the 20min CPR... He wasn't ready for mom to die even when her body kept trying to shut down.
Training in communication skills - aka getting it into people's heads that they have to mind what comes out of their mouths - and in respecting individuals' choices - aka recognising that unless you know the person you don't know what his life is like - is hard; but it is something that they try to address as part of best practice. After a few days on our local stroke ward, my mother said to me "I don't want to be a bed-blocker" and, suspecting that she was echoing something she'd overheard, I related it to her consultant. He nearly hit the roof and said tight-lipped: "that term is NOT used on this ward." Only, I wasn't sure if he was saying so to me, or rehearsing what he was going to say when he found out who on his staff was still using it.
We need some kind of families' zero tolerance policy to pull professionals up on cretinous, callous and lazy speaking and thinking.
I watched a good friend die in hospice of massive lung metastases from uterine cancer at a Catholic hospital, and the entire time, they talked with HER about how much pain medication she wanted and needed, and maximized the time she had with family and friends and even joined in playing guitar a couple of times. She might have been home if there was a way to get her enough oxygen - she needed super high flow, because she did not want to be intubated. The chances that chemo would have helped were minuscule and they opted not to try that either. THAT is respectful care and THAT is what hospice is supposed to be and can be.