Hospice- To use or not to use.

My mother was dying. With CHF, she was dying by inches each day.

Every normal, daily things that we do without thinking became a struggle. Eating. Sleeping. Going to the bathroom. Even the mere act of breathing.

She said to me - multiple times each day - "I'm so tired of being tired all the time."

So you tell me, OP - what, exactly, should she have been fighting so hard for? She had lived a great life, despite being widowed relatively young when my dad - the love of her life- died.

She was able to travel. She was active in church and our community. She raised 3 daughters to be productive, self sufficient, self confident members of society.

Hospice was HER choice. She had no doubt in the promise of the Kingdom, and as such had no - ZERO - fear of death. She wanted to pass peacefully with no pain and no distress. That's what Hospice provided for her.

I'm so incredibly sorry that your experiences, as they were, have been so dreadful with Hospice.

I myself will never, ever be able to repay them for what they provided for my mother and my family. Never. And I will be eternally grateful to them for what they did.

If you are so dead set against them, I sincerely hope you or yours never are in a position to need the comfort care they provide to people at the end of their lives in horrific pain and distress.

Rackla - you seem to equate breathing as living.

Hospice is for anyone who has 6 months or less to live. It’s called comfort care. No medicine except morphine. When it’s time for me to die, (and we all will) I hope I have hospice and a BIG dose of morphine!!

I am confused about your expectations of hospice. If you intend to continue fighting, then why would you involve hospice? That is not what they are for. But if you are facing death, then you might well decide to forgo further treatment and hope for a peaceful, pain free end. After all, death is simply a fact of life.

Asking "Why when you want to save your life, would they talk you out of seeking treatment?" seems to misunderstand the concept of Hospice. Hospice is not trying to save your life. It is not trying to cause your death, and quality of life medical issues not related to the terminal illness can certainly be treated with (like a broken bone or a wound).

Many of your comments reflect unrealistic expectations of Hospice Care.

So much here that's so wrong. I'll just say OK, your opinion is your opinion, but I cannot disagree with it more.

Anecdotal evidence is not terribly compelling, nor is it proof of anything but your own experience.

Snoopy, no problem, and thanks for the clarification.    I wouldn't necessarily disagree that trolling is involved.

Sorry I was unclear, GardenArtist! I definitely was not referring to you, I was referring to “Rackla”, who seems to be a troll.

You are a great contributor here and I always like to read what you have to say.

Sorry again for not being clear! Good reminder to me to make sure it is clear just whom is being referred to when not replying directly to a comment. Thanks!

Please keep in mind this in an international forum. Your experience is just that, your experience.

I would not have a second thought about moving my mother into our brand new Hospice House, should she need it. And I would not have a second though about talking to her about MAiD, which is legal in Canada and something Mum has discussed wanting.

Snoopy, is "this individual" referring to me, since I just posted? Or the OP?    If me, please advise which comment is offensive and I'll review and correct it.  It's not my intention to insult anyone; I was just being very frank, which I think is appropriate when someone unknown gives such strong "advice."

Thank you for your words. I was thinking what to say, and you said it.

Believing in an afterlife, I know that I will not 'fight until I can no longer fight'.

Being a cancer survivor, more than once since I finished my regimen, I thought "why did I fight so hard?" My family would have mourned me for a week or so and Dh would have had to learn how to run the washer and dryer---but honestly? I was always just FINE to 'not make it'.

I've known way too many people who have fought and fought and wound up with zero quality lives---and a whole cadre of CG's dancing to their care. Nothing wrong with that, but I've seen exhausted families PRAYING for a LO to just 'let go'. Yet, to the end, it's the person's choice.

I hope for a gentle exit for myself.

My experiences with Hospice Care has been calm and beautiful.

Wow! Please allow me to say how much I admire your courage in saying all you said here. You poured out your heart, this was REAL!
I completely concur with every word, but you said it all so much better than I ever could have.
People! Read this and believe what this person is telling you!
I have done hospice care, home health work, nursing home care and hospital aide work for over 50 years.
You got it, it is about money.
Dont get me wrong, there is a very definite place for hospice care.
Both my parents had hospice, which, I completely believe in under the right circumstances. But they had it at home with me there doing most of the care. I never would allow a DNR, because that was a decision only I would make at the time.
My Mom’s care was very good. I was very very great full to the beautiful nurse who helped us through that dark time and sent her roses with our thanks.
When my Dad had hospice, about 10 years later, it became clear that the RN wanted to wind things up. I met her at the door and said she was no longer needed.
I reported everything that occurred to our doctor who asked if we wished to contact the county prosecutor.
My Dad decided that there was a measure of ambiguity and we would let it drop, he had other things to deal with.
I found out sometime later, that a neighbor of ours had a very similar situation with this same nurse, so maybe we should have done more. But since we notified her superiors we felt it was up to them to monitor her actions.
(At that time, in Ohio, hospice received a set amount of money per patient. They could use it at their discretion.
If the person lived one day or six months, it was a lump sum.)
At home, in the hospital or wherever: Keep your eye on what’s going on with your loved one. Ask questions, don’t worry about sounding dumb. Snoop. Get answers.
Always ask yourself: If it were me, what would I want done?
All the best to anyone having to read about this subject.
There is a definite place for hospice, a gentle, dignified form of care.
But everything needs supervision.
Many thanks to the person who wrote this very courageous first hand account.

I just reported an insulting comment made by this individual on another thread.

You've expressed some very strong, and I'm not sure helpful, opinions, to which you're entitled.    But you write from the perspective of an MSW, not a nurse, NP, aide or physician.    Your educational training and current perspective would be different from that of a trained medical person. That's not intended to be an insult, rather, an observation.

One issue which I believe is erroneous is your suggestion to "have the V.A. Give you the medications. "   Veterans always paid for meds when we got them.   It's been some years since, and that may have changed, but the VA isn't in a position to just donate meds, unless their position on end of life medication has changed over the years.

Another factor applies to VA provided meds:  they can be substituted.   I terminated them and went back to nonVA prescribed meds when a well meaning doctor whose primary function was a teacher substituted a cardiac med, to which my father's cardiologist was adamantly opposed.   He said it was NOT an appropriate med for my father's condition.

Beyond that, my experience with hospice has been limited:  first time was when my sister was dying of metastatic cancer, and the hospice was an adjunct function of the hospital in which she had treated.    It was in a different area of the hospital, but I was very pleased with the treatment and physician assessment.  The second was an outstanding religiously owned medical treatment complex, with provisions for hospice treatment in the same facility as rehab.  Thus, no transfer in the cold winter was required.

Hiring someone to care for a terminally ill patient in his/her "own home" is more challenging than you can realize unless you've been in that position.  I considered that, as well as creating extra room for someone to stay, as 24/7 care would have been desirable.   I would either have to move in to also support the caring team's needs, including food prep, etc.   There wasn't enough room for that.   Nor would they have immediate access to other supports provided in a facility.

"Continue to fight even if...given a terminal diagnosis."   That may apply in some circumstances, but not in others.   Encouraging someone to battle against a diagnosed impending death puts a LOT of strain and obligation on that person.   I don't have the experience that you do, but I think that oftentimes people fight to survive for the benefit of their families, but are relieved when the family acknowledges that the end is near and that it's all right to "let go".  

My sister was miserable in her last months of cancer; it was very painful to see her suffering so much.   I would never have considered telling her to try to fight.  In fact, she couldn't move, or speak, let alone "fight" during her last days.

This isn't meant to be critical, but rather explanatory.  "DPOAs" cannot put anyone on hospice; a DPOA is a legal document, not an individual.   The proxy created thereunder can take action, but the document itself is just that.    And I would think that involving hospice would be more likely within the context of a Medical POA, or Living Will.   

But it isn't anyone's fault except the proxy if he/she isn't familiar enough with the situation to make good decisions.   It is unfortunate though that some proxies don't know how or understand the need to educate themselves on their responsibilities.

The actions you address in your 6th paragraph are diametrically opposite to those I've experienced.   It was the hospital staff, from the attending to the nurses, who concurred that hospice was on the horizon.  

I could address other statements you've made, but I will end by saying that you clearly have strong opinions, to which you have a right, but please think carefully before you attempt to influence others.  You ARE NOT in their shoes, nor have you been through what could be years of medical treatment or decline.

These are individual decisions, and although others can opine, the decision is not theirs to make.

I know the criteria for Hospice has changed in the last 10 yrs or so. I also realize when Hospice is suggested its because the doctor feels that there is no more that can be done. I also realize that any treatment I was getting for the illness I will probably die from will be stopped. I realize that Morphine maybe given to relieve pain or ease breathing. I realize that under hospice I will not be sent to a hospital. I have signed a DNR. All this should be explained to the client and the family prior to admitting. They can chose not to have Hospice. They can choose to stop Hospice. They can choose a different Hospice. Hospice is when there is no cure, when meds no longer work, when u have fault the fight. Its a way to leave this world in peace, pain free.

I agree, there is family looking for their share but that has nothing to do with Hospice. I also know Hospices ask for donations. They are paid my Medicare so I have never seen the need for donations.

"If you have too much cash or assets to qualify for Medi-Cal, which will allow someone to be paid for by the county, to come into your home and take care of you. Transfer assets out of your name. But, be for certain the person whom you give it to to hold for you is trustworthy. People will do anything for money."

This scares me that you said that. That you are a Social Worker and have no idea how MediCal/Medicaid works. You cannot hide assets within the look back period. Its fraud. Your assets need to be spent down for your care and then u apply for MediCal/Medicaid. Why should the Taxpayers of your State pay for your care when you have money. I think you maybe burned out working in Hospice care and need to find something different in SW. By the way, that paragraph is why I am not keen on Social Workers. They can't seem to look out of the box.

I have a feeling you are young. You haven't really have the experience needed to see out of the box. There comes a time in peoples lives that they just have to except that everything has been done and its time to let go of life. Once they and their families accept this, then an actual peace comes over the person. They enjoy the time they have left without those pills and treatments that probably made them sick. A good Hospice will make sure they are comfortable and happy.

This is the comment that leapt out at me - "Fight until you can no longer fight".

Many times I've expressed my hatred of that well know poem that urges people to "not go gentle into that good night, rage, rage against the dying of the light". Sorry but when death is coming for you all the fighting and raging just results in extra mental and physical anguish not only for the person dying but for those who care for them - some people do give up too easily but there are probably many more who fight too long and too hard. Go to any nursing home and observe the many people existing with end stage dementia and whose bodies have completely failed them, leaving them as helpless as a newborn; a gentle exit is the best we can offer them.

Hospice means comfort care. It means you are no longer fighting for a cure. That means no more tests for diagnosis, no more treatments other than comfort care, no more curative care unless comfort is dependent upon it (decubiti, pneumonia, diuretics, insulin). Those entering Hospice should understand it is end of life care.
Death comes to us all. Some of us accept that. Some of us never can, and never do. Either option, acceptance or fighting should be up to the individual involved.
I, as a retired RN and ALSO very familiar with Hospice and I thank the powers that be for it.
You are very articulate in giving your opinion, and it is appreciated; it is excellent food for thought. I would tell anyone who agrees with you never to get Hospice for themselves. That I disagree with virtually every single word you have said is neither here nor there. Without any hesitancy whatsoever, Hospice is, has been and will be, whilst a choice in our lives, MY CHOICE. And I long for the day all states win a "Right to Death" right under the law.

I recall reading that a small percentage of patients who were put on Hospice and most of their medicines used prior were now removed.... that the patient actually got better. It depends on the medical condition.

There are times when the meds give off side effects that cause more meds to be use to help those side effect, and then new side effects pop up, and it is a never ending circle. I believe we are overloading patients with too much medicine.

Both my very elderly parents were put into hospice as per the doctor's advice, and the both had a very peaceful, pain-free passing.

Why would you keep someone on curative meds when they are at the end of life? What would you expect to cure? Hospice comes in when the patient is beyond life saving. If someone wants to continue to seek curative treatment, palliative care rather than hospice should be employed.

“Don't let anyone put you in a nursing home.” You say you have hospice experience, but have you ever been a caregiver to someone with a terminal illness. Have you ever cared for someone with dementia? Try it sometime, I think you'll have a great awakening. Eventually it's no longer about the patient, it's about the caregiver. Dying with dignity is one goal we all want for our LO. How do you insure that when you, as a caregiver, are stressed out, don't know what to do, feel hopeless or resentful about the situation, even contemplate suicide?

You suggest people should apply for home care before hospice. You also say most cannot afford home care. So what's the option for them?

I, personally, suggest that it is never too early to apply for hospice. My experience was a very positive one.

It sounds like you have not worked for many quality Hospice Organizations.
There are 2 basic types. FOR profit and NOT for profit.
I am not going to "argue" specific points of your comment but..
Yes Hospice will not continue if you choose to seek treatment for the terminal illness that has qualified you for Hospice. But I could argue that if you have 2 terminal illness you could potentially continue treatment for 1 while being on Hospice for the other. (If you have cancer AND CHF and you qualify for Hospice for the CHF you could still continue treatment for the cancer.)
I am sorry that you have had bad experiences with Hospice. But please do not paint all with t he same broad brush.

You seem to feel very confident in Your thought process and decision making.

Move forward confidently in your decision making.

I do not agree with several of your observations.

I will move forward, based on my own research and experiences, as I see fit.