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?
A person's death is the same timetable whether Hospice is there or not. With Hospice one knows that their love one will be transitioning without pain.
Both my parents were on Hospice as there wasn't anything medical more the doctors could do, my parents were in their final chapter. And I was thankful that both passed very peacefully.
Kathy it is my understanding that you are a MD. Therefore you would know that it would take 200mg of morphine to take out someone. Hospice uses between 5-20mg Q 2-4 hrs for patient care.
I agree with FF and Jessie.
Kathy, I read portions of your other post and what you considered improper care by hospice. I am sorry for your loss, and for the unpleasant experience you had.
My husband was on hospice care in our home. He slept a lot, as part of the disease process, not from drugs. His pain was mental anguish not physical pain and I sometimes used the drugs provided for that, with my husband's agreement. ("Do you want me to give you something to help you feel calmer?" "Yes please.")
My husband was on hospice about 5 weeks, before he died peacefully in our bedroom, holding my hand. The hospice people were very surprised when I called them. They thought he had several more weeks. The doctor reading the autopsy report was surprised that he made it as long as he did. What is happening internally is not always apparent from the outside.
My mother was on hospice care in a nursing home for a few months. She got extra care and attention. The hospital thought she may only have days to live, but obviously they were wrong. Mother continued to improve and was discharged from the hospice program. She lived another year, and when she did die it was so sudden that hospice wasn't in the picture at all.
When someone is accepted for hospice, it is the medical opinion that they are likely to be within 6 months of dying. Obviously that is an opinion and can be wrong, but it is based on experience and statistics. So if you have a loved one on hospice be prepared for their death. If they are in pain or severe anxiety expect that drugs will be available to minimize that.
With my husband, in our home, I was in charge of deciding when to use the drugs.
My husband's dementia had progressed to the point he was sleeping more and more. When he was sleeping 20 hours a day we called in hospice. I did nothing to make him sleep more, and engaged him when he was awake. I don't know why you think using sedating meds has become the standard of care. That wasn't the case for either my mother or husband.
Should you expect your loved one to be medicated heavily? Maybe, if that is what it takes to keep them out of distress. But not if it isn't necessary. Should you expect them to die soon? Yes. That expectation is part of the criteria for being admitted. But in a large number of cases the person does get better and leaves the program without dying.
I suppose there are bad situations in some hospice practices, as there are in some hospitals or clinics or nursing homes, etc. But the program itself is not euthanasia.
Hospice care is supposed to be directed by the patient or their representative usually the primary caregiver. There are things that hospice can and will do to ensure the comfort of the patient. 24 hour sedation is not one of them.
As you are aware there is a standard pyramid for the use of pain relieving medications and narcotics are being increasingly more tightly controlled because of the increasing abuse
The horrible cocktail of medications you describe as being given to your mother
was not our standard of care. Yes they were available either prescribed by the patient's primary physician or the hospice MD. Liquid morphine and Ativan were the drugs of choice. They were not automatically ordered and the doses started were very small. The morphine 20mg per ml .25 ml to 2ml every 2-4 hours. the dosing within that range was at the discretion of the RN. This was started if the patient was complaining of pain and many patients came to us on very low dose morphine who had breathing problems to ease their discomfort. Painful conditions at admission were usually already being treated by narcotics and the were continued and if not effective changed or increased. The goal was an extended release medication such as a fentynal patch with a short acting breakthrough being available. An order for an increase in the extended release dose was obtained if necessary based on the number of doses of the breakthrough medication that had been used in the previous 24 hours. Very large doses were sometimes needed when patients became tolerant to the medications. Doses that you as a physician would never prescribe in regular practice but requests to keep the patient totally sedated till death were not honored. Should that be approved and in ten years I never saw it done, the patient had to be admitted to the hospital and properly monitored.
Anxiety and agitation as you know are common in the dying patient and part of comfort care is to try and relieve both these fears and the more severe agitation where the patient in yelling and flailing totally out of control. Many patients would be admitted already on anti depressants and anxiolitics. Slight restlessness was not an indication but they could be used for night sedation. If a patient became uncontrollable at home the patient would be admitted to the hospital with the family's permission. i personally have had to call the police to facilitate that and I expect you have had patients brought to the ER in this condition.
I understand your sister wanted this level of sedation and for some reason the hospice complied in spite of your oposition. It does indeed sound as though this hospice did act as a death squad and their practice sounds like the infamous "Liverpool pathway" practiced for a time in the UK which was horrific and as an English trained RN could not understand how it was tolerated.
On reflection a whole conspiracy of events combined to lead to your mother's death and totally understand your wish to make it known that this was what happened and alert others to be vigilant. This applies to all branches of medicine these days because medicine has become so specialized and compartmentalized that no one seems able or knowledgeable to view the whole picture.
I do hope you find some answers to your concerns they are certainly deserved.
Euthanasia is different. It's the massive overdose using 390mg (1ml) of pentobarbital per 10lbs of animal, injected in a vein. Roxanol, used in hospice is dosed 20mg/5ml. So if you drip 1 ml in, that's only 4mg. Not lethal.
Those who scream the loudest are the relatives who appear at the last minute, unaware that mom or dad are so close to leaving. Very sad for them, lots of fear, obligation and guilt converge at once. It can drive families apart for a long time, even permanently.
You don't NEED Hospice. If you can witness death and not let it affect you, go ahead without it. It's a personal choice, no more, no less.
Kathy, I am very surprised you weren't given more say over what drugs your mother was given. I (with no medical training) had control over what to give my husband. When the comfort kit was explained to me I said, "I won't be using the haldol. It is not to be used for people with lewy bodies." I gave them the brochure on the subject and the wallet card saying my husband should never be given it. The hospice folks had never heard this and seemed very interested in the literature I gave them. The social worker said, "It is a standard part of the kit, and I'm not sure we can leave it out, but you certainly do not have to use it." As it turned out, when the kit arrived a few hours later it did not contain haldol.
My mother had had some previous bad reactions to morphine and hospice did not use it for her.
So in my experience, the patient or the primary caregiver has power over what is given. I am very surprised you did not have the opportunity to oversee your mother's meds.
Actually, if you expected her to live another 2 years, and her doctors had to stretch the definitions to say she'd die in 1 year, I don't understand what she was doing on hospice at all. That is for people expected to die within 6 months.
So your situation is confusing to me. But I am terribly sorry for the very distressing experience you had with hospice.
Now, if a DR asks if the family wants him/her to "help "dad" along....then perhaps it's a different story. I do believe my FIL's oncologist gave him an overdose of morphine that allowed his poor, sick body to let go. Do I have proof? No, and I don't want any. Dad was drowning in the fluid accumulating in his lungs faster than they could suction it out. He could not speak, he was comatose, but still fighting everyone--the morphine just helped him along. He had, at most, a day or two of total misery left. I wouldn't let my beloved dog live like that, much less a person I loved. He passed 10minutes after the IV was injected with whatever the dr put in it. I thank him to this day for not letting dad suffer any more.
And, yes, the prodigal son did not take us seriously and did not make it to the "death bed". He regrets that to this day.
I beg to disagree. My mother complains about EVERYTHING that costs ANYTHING, and if Hospice was costly, we'd have heard about it. Hospice is a loving, wonderful way to ease a loved one out of their suffering. I don't know where you live or what your experiences have been, but hospice was a godsend for us with daddy. I expect they will be also when it's mother's turn, if needed.
I'm glad Hospice was a help for you, considering the circumstance. I live in Cleveland, and my mom was at a "teaching hospital" that used to be a decent hospital location of the Cleveland Clinic. If hospice for you was paid by Medicare you'll see the bill when it comes in the mail.
I stand by my comment it was about the money.
Hospice had nothing to do, since her needs were taken care of by the ICU nurses. Only person from Hospice was the doctor and her intern. Since mom had passed before Hospice was called the hospital really pushed for her to be taken off life support, since she had no chance to improve. Hospice doctor visited the room daily which of course was charged to her insurance. It was in the best interest of the hospital to discontinue life support, ASAP.
Hospice may have done well,for some of you, but for others it is not always the case.
Hospice= All about the money.
Some hospice programs are run for profit and some are non-profit, but all of them are funded by Medicare.
My husband was hospice in our home for 5 weeks before he died. The bill? Absolutely none. Not in mail or electronically. No bill from hospice. Not for the doctor or the nurses or the medications or the hospital bed and other equipement. No hospice bills whatsoever.
My mother was on hospice for 3 months, in a nursing home. The regular costs for her nursing home continued, but there were NO additional charges for the hospice services. None.
Since your mother was not on hospice I don't see how you can consider yourself an expert on how they bill!!
Are you saying that you ( or family) are being asked to pay those bills?
If it's a way to make money, it's mean and cruel. Dad's dr signed off on it and he was placed in Hospice the next day. At home. Maybe if it's administered in a hospital setting--I still can't see it being about the money. Dad never saw a dr once he was placed in Hospice care. That was our experience, I am truly sorry if you had a bad one.
Perhaps his mom wasn't old enough to have Medicare, or had private insurance. Those don't always cover Hospice in full. However, in this circumstance, I'll bet there is charitible support at the hospital for bills like this, but if he' s the one in charge, he needs to know to ask.
If you are being billed, it couldn't have been Hospice but maybe Palliative Care that your Mother was receiving.
My Mom passed almost a year ago and she had Hospice. I haven't seen one bill in relation to Hospice.
I guess the lesson to be learned if there is one is: Ask a lot of questions if your loved one is dying. Don't leave it up to chance. Ask the doctor or nurse or whoever is administering the drugs what they are giving, how much or they giving, why are they giving it. Stay there until you get the information you want. Its too late when they have already died. If you are not happy with the care, do something about it. Then maybe we won't keep having this conversation......er, argument.
I personally think it is rarely euthanasia. Instead it is easing discomfort so the body can stop fighting. I've often heard that fighting pain can keep body and soul together, even after the will to live is gone. I hope when it comes my time, no one argues that I have to keep fighting pain. That would be misery. Just let me go.
As explained by the ICU head, when my mom was brought back to ICU, he mentioned she had passed the day she returned. They did 5 days of medicine to no avail. I did not know about Hospice until a check of one of her insurances. He made no mention of her being on Hospice. He was only trying to convince me to take her off life support, He made mention of her age, what her body was going through and even mentioned his faith. It is probably different for some of you, but in my mom's case it was about the money.
My mom had 3 insurances, Medicare, Aetna and Mail handlers (She was a Govt worker). It was through Mail Handlers website I found out about Hospice and the other bills to the insurance. In fact the check was made out to Cleveland Clinic and not to the Hospice doctor, though I believe she was the one that made the requests for payment.
My intention is not to scare anyone, just be informed. The numbers are from what the hospital, etc bills the insurance and what the insurance actually paid. If you get a chance see if you can look at your mom's (and dad's) medicare and/or other insurance information. Medicare gives a breakdown on what a provider billed them, what they paid,and what the insured may be billed. She (or you) should receive statements in the mail from Medicare from time to time on what has been submitted to them and what they paid. Her other insurances, would do the same.
Not if it is in some hospitals and Medicare is footing the bill. If there is no chance of survival, the hospital, to keep Medicare bills low and Medicare happy, will subtly or not try to convince survivors to let their loved ones go.
As I mentioned, the ICU head, used this to try to get my mom off life support. He even was disappointed when I mentioned to see if she would pull through for one more day. I went the following day to see her, saw how she was and made the painful decision to end life support. You should have seen the sense of relief on his face regarding the decision. He came to her room even while I was talking to the Hospice doctor, quickly left and never saw him again.
Yes she had full Medicare. No bills from Hospice, though again, it was handled through Cleveland Clinic. In total for all her care, before she passed the Clinic pocketed close to $250K. Care facilities your loved ones used may not be all about the money, Cleveland Clinic and its facilities definitely are.
Unrelated to hospice, but to prove my point. A bill from the Clinic for $500 arrived. It is the difference from what the Clinic charged and what insurance may/will pay. In this case the bill the Clinic sent to insurance is a little under $28,000
Get this, her Mychart account has been disabled, but the My Account is still active. All about the money.
What argument? This is an informative thread. Have you heard the phrase, "Your results may vary"? That could cover how Hospice is delivered in some settings, etc.