I would never put my parent or someone I love into a hospice program unless I knew for sure they only had two weeks to live. Rest assured, I know what I am talking about because I have worked for various hospice agencies for over ten years.
First of all, what I don’t like is that all medicines unless curative are stopped unless it is a medication that is essential. Essential meaning you would have a heart attack if you don’t take it.
One way around the medication is to pay out of pocket to continue all of your medications or if you are a veteran, have the V.A. Give you the medications. The reason medication that is curative is discontinued is due to Medicare or Medi-cal will not pay for curative medications and pay for hospice at the same time.
i have seen patients who had a DPOA put them on hospice, then be informed about their medications and the hospice nurse explain it in such away that an insane person would not agree to discontinue their medication.
Many hospice patients never had so much attention paid to them by so many staff that they enjoy it. Believe you me they are loving you to death.
If you decide to get a second opinion or to go to the doctor about an illness that is rated to your hospice diagnosis. Hospice staff will try to talk you out of it. Why, would you ask, when you are trying to save your life would they talk you out of seeking treatment.
It comes down to money. The hospice will or you will incur a bill if you seek treatment for your terminal diagnosis. It is about money. Most hospice will terminate hospice so you can seek the treatment, thereby you will not receive care. And, if you seek treatment too many times, they will not take you back. Why, because they have to do paper work again to get you back on hospice. I have seen a guy seek treatment too many times and was canceled from hospice. He wanted to live so he continue to seek treatment. Only to be discontinued from hospice.
I have also seen people get better on hospice. Primarily due to a medication review. When taken off most of their medications, they got better. Which means they should have had a medication review years ago.
Have you ever watched on YouTube the show “mystery diagnosis or diagnosis unknown?” You should watch this show. Medicine is not an exact science and you know your body better than anyone and doctors make mistakes. Not saying you don’t have a terminal illness. But, don’t get on hospice until you have no fight left in you. Fight to the end to stay alive.
i have seen things that should not have happened and I cannot disclose on this site. It should not have happened. One nurse I will call death nurse. That’s all I am saying.
Dont give up on life because it is your life. Fight until you can no longer fight. People might say he or she is in denial. Let them say what they want..just keep fighting.
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. Even with the ones you trust. I have seen it.
And if you think a will or trust will take care of everything...think again. They can contest it. I have been in many depositions over a contested will. Even when it specified no funds if contested. People will do things out of spite.
Dont let anyone put you in a nursing home. Especially today. The Covid is out there. I warned people that the Covid would do reckage at a nursing home and look what it has done.
If you can afford, most people cannot. Hire someone to take care of you in your own home, continue to fight even if your doctor has given you a terminal diagnosis.
Imagine agencies that go to nursing homes and advertise for terminal patients. That is sick to me. Give everyone the opportunity to live their life to the fullest and if not take care at home.
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.
Many of your comments reflect unrealistic expectations of Hospice Care.
Anecdotal evidence is not terribly compelling, nor is it proof of anything but your own experience.
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!
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.
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.
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.
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 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.
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.
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.
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.
“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.
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.
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.