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Jerry's home health nurse practitioner just left. She immediately recognized in Jerry what I have suspected; she recommended palliative care. The nurse practitioner also said that hospice would also be appropriate, because she does not expect Jerry to live longer than another six months.
Jerry knows none of this and neither does his sister or his estranged daughter. Does anyone have experience with palliative care?

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In Indiana, I tried to find out the difference & got no where. I was referred to Hospice. If your loved one is truly close to death then it's the way to go. If that's not the case, don't go that way because no ER will accept your loved one for treatment unless they've been released from Hospice & when I realized Hospice was just going to let Mom die when all she needed was a transfusion & I'd made a mistake about her being on Hospice. It took "forever" to get her released from Hospice. It took 45 minutes for the nurse to arrive, the she tried to persuade me to just let her give Mom pain medication in the form of morphine, (which Mom was allergic to - and this was after she'd read Mom's medical file & checked Mom's vitals). When I insisted I wanted her released the nurse said she had to go down to her car to get the appropriate form. Mom was in a small hospital & it should have only taken the nurse 10 minutes max to go get the form. Over a half an hour later, she returns. By that time, I'd gotten a phone call from the Hospice supervisor trying to persuade me not to go through with releasing Mom from their services. I was livid. I'd been told it was no big deal to have the person on Hospice released. NOT SO! At any rate, it took another hour for the paperwork to be completed so the ER doctor would treat Mom. It was a night-mare! Mom lived almost a 16 months more. When it was obvious Mom was dying, then I did call Hospice in. This time was totally different & was what Mom needed. She lived less than a week & her passing was very, very peaceful.
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Hospice care is a far cry from where it had been when I first became a nurse over 40 years ago! Back in those days, it really was about keeping patients comfortable and supporting patients and their families through the dying process. 
Since then it  seems to have become a way of delivering cheap sub-standard care that is less about providing for the patient's needs and comfort and that is more a means of promoting and hastening rather than supporting the natural dying process. 

As soon as someone is diagnosed with dementia, with cancer or following a stroke, members of a hospital's "palliative care" team swoop in and push the DNR agenda and promote hospice benefits. What they often fail to inform families about is that choosing hospice means giving up all personal control over treatment choices, etc. and that there can be extreme differences in how patients, families, and hospice agencies interpret "comfort care." At some agencies, "comfort care" means treating urinary tract infections to prevent fevers and delirium; other agencies, however, don't treat infections of any kind. Some agencies provide nutritional support (Ensure, Boost, etc.) and some don't--some restrict nutritional support to patients "who can't eat anything else at all."

My advice to families?  Don't choose hospice unless death is but a few days away, and opt for in-patient brick-and-mortar hospice if you can. That way, there's a much better chance that your loved one will be fed and medicated for pain in a timely manner.  Have enough family members available who can sit vigil at the bedside to watch and speak for the patient.

If the patient is indeed 'terminal' -- choose palliative care, because with palliative care you have more options. When the palliative care team at the hospital comes knocking, ask the palliative care nurse to tell you who he or she is employed by. Some palliative care professionals work for the hospital and some for outside agencies and some work double-duty (which I see as a conflict of interest, but that's another lengthy discussion worthy of a thread in itself!).

If instead you believe that hospice would be a good choice for you, enter the situation well-prepared! Demand to be provided a list of hospice agencies from which to choose from; that is your right under Medicare.  Go visit a few agencies; interview the staff. Ask questions about their philosophy on end-of-life care, for example, do they treat infections? Read their contracts carefully! Obtain a contract that has specifics about what kinds of care is delivered! Do they promise nurse visits three times a week? Do they promise to provide 'light housekeeping'? Wound care supplies?  If so, tell them that you want to see that IN WRITING!  Don't accept a hospital discharge until YOU are satisfied that you have selected an agency that meets YOUR specifications -- not the hospital's or the palliative care team's.  You can appeal a discharge to Medicare; the hospital must provide you with a document that has details on how to file an appeal. Don't allow social work or other hospital staff to frighten you into thinking that an appeal will fail or that you "might" have to pay for the in-patient days spent in the hospital during the time of the appeal. 
A contract that specifies each of the services to be delivered is especially important if the patient resides in an assisted living facility or nursing home. It's so easy for hospice to shirk responsibility in those situations and for facility staff to expect hospice to deliver care that they might otherwise be responsible for. What happens too often in those situations is that the patient suffers repeated episodes of 'missed care' because it has not been made explicitly clear who is now responsible for what aspects of routine care. When hospice can't provide a service-specific contract, have hospice promises documented by the facility in the patient's personal nursing care plan.
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XenaJada Feb 24, 2020
Excellent!
Also, not all hospice agencies are the same! My relative went under hospice care for a month. What a JOKE that was! All of this particular hospice program's nurses lived in a city that is 35 miles away and never wanted to come at night if she needed them (she PF and CHF and was having panic attacks).

They dropped off a pain kit (morphine, Haldol, Tylenol suppositories) and made it pretty clear the family was expected to handle any administrating of these meds. She lived alone, did not have a sitter, and I lived 20 miles from her. This relative thought she wanted to be on hospice because she thought it meant someone would be coming to help her shower and do light housekeeping. NOPE. I seized upon this awful experience to convince her to go to AL, which she had strongly resisted for 2 years despite desperately needing to do so. She agreed to move and is thriving there. I'm 100% convinced she'd be long dead if she had stayed home and under this particular hospice program.
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In New Hampshire, people are unknowingly forced onto Hospice and Palliative care and then denied treatment and overdosed with morphine which is not comfort care. It's hastening death for many who aren't ready to die, but pushed into it. In this state, ILLEGAL Euthanasia is being practiced by Hospice/Palliative care. Steer clear of both, in NH any way!
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I have to agree with McArnold. My mom was on Hospice for Alz/dementia for 2 to 3 years and it was mainly for Palliative care (keeping her comfortable, making sure she was eating and helping with her needs.) Eval every 60 days to make sure she wasn't getting better but in fact declining. In some cases she had stayed the same but luck would have it she would either fall, get some sort of infection or catch something that would require medication and or attention immediately, so therefore she would be re-qualified. The last 6 mos of her life she would see the aid on a daily basis due to needing more and more help. Social worker, hospice company (interview hospice companies or ask the social worker if she has a favorite, look at reviews) can walk you through all. Good Luck and God Bless
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Here's the way I look at Palliative vs hospice: Palliative Care is a consult service that provides extra support to patients with a chronic or life-limiting illness that has symptoms that are burdensome - like pain, shortness of breath, constipation, or extreme tiredness. They are experts at symptom management and help the person clarify what their goals are for living well. Do they want to continue with treatment in order to live longer, and deal with the unpleasant side effects? Or, do they want to be more comfortable and avoid hospital visits? The focus of Palliative Care is on quality of life. They work along with the person's other medical providers to develop a plan of care that meets the person's values. They are generally available in the hospital, but some home health agencies now provide Palliative Care services.

Hospice is an insurance benefit that is appropriate when the patient has a life expectancy of six months or less, and curative treatments are no longer working or the person decides that the burdens outweigh the hope for improvement. That is why hospice doesn't pay for curative treatment like chemotherapy or heart surgery. It does pay for treatment and medications that will keep the person comfortable. It also pays for medical equipment like a hospital bed, wheelchair, and oxygen. It also pays for a team of people who visit the person wherever they are (home, AL, NH) to provide care and support the family. This includes nurse visits, social work visits, home health aides, and sometimes chaplains, music therapy and even massage therapy. But it almost never includes 24-hour care, so family will have to provide this if needed, or hire private duty caregivers.

I like to think of Palliative Care as an umbrella that provides care for a larger number of people when the illness gets more complex, and then hospice is brought in under that umbrella for end-of-life care. Many people are only on hospice for a few days, but the benefit is available for six months or more, as the person is evaluated every 90 days to see if they still qualify and so the overall time can be extended.

Hope this helps!
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Reply to mtyra1
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They put my late mother on Palliative Care after she had suffered an ischemic stroke and there was no chance of her living. Tbh, I was confused about Hospice vs. Palliative Care as I was EXTREMELY tired from active OUT OF STATE caregiving.
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Reply to Llamalover47
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I don't know where you live. Here in Washington State if you enter Hospice, you usually won't get medications that may cure the disease. You can still receive them if you are using Palliative care. I have seen instances where a nurse for palliative care does work to coordinate care for all patient issues rather than just cancer, or high blood pressure, etc.
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We live in VA. My dad lives with me and is on hospice care for Parkinsons. It will be 1 yr on hospice in March. Hospice agency NP does an eval on him every 60 days. They need to document a decline in his abilities or needing antibiotics within the 60 days in order to requalify for hospice. Can’t imagine life without hospice. Nursing assessments weekly. Shower assistance twice a week. Supplies- gloves, wipes, diapers etc. Dad lives the fact he doesn’t have to leave the house to see his PCP.
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JennyCville Feb 23, 2020
So glad you have this help - do you mind me asking where in VA?In a similar boat with my dad.
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Hi there! Just to make sure you’re aware, ANYONE can make a referral to hospice. I’d give them a call, they’ll walk you through it. Good luck!
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Suggest you call three hospice companies in your area and interview them. Let the hospice representative explain to you the difference in hospice / palliative care. Each state seems to be different for some reason. As mentioned previously, some hospice companies / personnel - are better than others. Determine which company might be best for your needs - even if you don't hire them immediately.
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Reply to LexiPexi
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Palliative care treats symptoms but does not cure the problem. Hospice is to provide comfort/pain control without the goals of curing or extending life.
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elaineSC Feb 17, 2020
Then they are basically the same, aren’t they? Both just keep a person from suffering in pain.
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We used palliative care to help manage my husband's pain symptoms from cancer in his bone. They were great at making medication recommendations to manage the pain effectively without all the side effects (excessive sleepiness, etc). He had palliative treatment several times throughout his course of illness for different reasons. I would highly recommend it, because many PCPs or specialty docs do not have the medication expertise that palliative care can provide.
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It was kind of a continuum for us. Palliative care, as I understood it, was the medical side of prescriptions and medications. Fortunately, my mother made the decision herself to go on palliative care. This meant that she was taken off all her maintenance medications (high blood pressure, statins, blood thinners... whatever). She could receive as much medicine to keep her comfortable that she wanted.

I suppose she could have returned home in palliative care, but her condition deteriorated so rapidly once she went on palliative care, the hospital suggested she come home on hospice. By that time, she was non-verbal and has slipped into a coma-like state. We could have had as much hospice nursing as we wanted, but we had family, so we could really do for her what the hospice nurses did. They came by three times a day to see how we were holding up. I can’t say enough about how the hospital personnel and the hospice personnel treated us during this time. From the time Mom went on palliative to the time she passed away, it was a matter of six days.

So... palliative care is the medical side of keeping your mother comfortable... mom has a catheter, as much oxygen as she wanted, pain killers, any good she would have taken in. She did not have IVs. She could have decided to stop palliative if she wanted anytime and had any medical intervention she chose. But she chose to quietly slip away. Hospice was the part that kept her clean, gave her (and us) the emotional support we needed, let us know if she was in pain, monitored her vitals. But none of that beeping, noisy, clamor of being infused with a bunch of medical interventions that were just going to keep her around but never let her live... if you know what I mean.
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RedVanAnnie Feb 17, 2020
You had some great care if Hospice (or Palliative Care?) came by three times a day! Our Hospice service was a nurse for about 1/2 hour 2 times a week and an aide another 1-2 times a week, if needed. I could have used more help, esp when things got critical, but that was it, The rest was me.
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Mom lived 2 years on hospice, and I used them as a home clinic. I made them do routine labs and reorder her routine medications which was just her insulin and lopressor, and lactulose for bowel movements. She had end stage Alzheimer's though; mom always qualified for hospice due to decline but I really took care of mom big time and she lasted years longer. I fired two hospices, but the last one I liked. I made mom a DNR from the very beginning, but that still means you CAN have them treated. I took mom to the Emergency Room many times for UTIs under hospice. I got mom treated for everything EXCEPT I did not want her resuscitated if she goes down like her heart stops.
LET ME EMPHASIZE IN BOLD LETTERS--DNR STILL MEANS YOU TREAT THE PATIENT. IT DOES NOT MEAN DO NOT TREAT. For some reason people think it means "do nothing let them die" even doctors and nurses.. It means no CPR. That's all it means. So don't let "DNR" scare you. But you have to make sure the doctors and nurses know what DNR means because a lot of them don't. Even under hospice you can STILL TREAT.
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anonymous951699 Feb 17, 2020
Thanks for the emphasis.
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We just signed my mother, 88, to palliative/supportive services. I think of it as an added layer of support for her. While I am a nurse living a state away I wanted her to have access to a nurse every other week or so. Someone to get eyes on her, different than a doctor’s eyes. She still goes to her cardiologist, PCP and dermatologist. She does not want any more hospital stays. She has heart failure stage 3-4. Chronic Kidney Disease and an autoimmune disease pyoderma gangrenosum. Recent events included four overnights for GI Bleed. This is ER visit, ambulance ride for an hour to a larger hospital, GI upper scope and transfusions. She wants to only have things done on an outpatient basis. If she needs a blood transfusion and feels weak she calls her doctor or her palliative care nurse to help facilitate this. She is not ready for hospice quite yet but the organization providing palliative care will help her when that time comes. Home Health, Hospice and Palliative care have differing rules and support they can provide.
She qualifies for hospice with her heart failure, but we are giving her some time on new diuretic to see if her condition may improve.

Palliative care manages patients with chronic conditions that will not be cured.

I hope this helps. Her palliative care services are paid for with grant monies.

all the best to you in this difficult time
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Validavis1 Feb 17, 2020
Please tell me what type of grant you were able to get that helped with Palliative care. Thanks.
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My Mom, who has been in assisted living for a year, has had hospice care since September. I recommend it!! While the assisted living is GREAT, the additional hospice care (covered by Medicare) has been a supportive help.
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After reading everyone's answers, it appears to me that each state is different in pallitive care vs hospice. It's best to talk with your doctor to see what your state provides if anything for the patient. I Listened to everyone who gave answers who are speaking from their own state. I hope they didn't confuse you more. Good luck to you!
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Couldn't this be summarized by saying that palliative care is simply a type of care that seeks to reduce/eliminate pain and provide comfort instead of a cure, and the term itself has nothing to do with whether the patient has a terminal condition or not, or a limited life expectancy? Hospice is a specialized service system that is designed to provide palliative care specifically for patients who are not expected to live more than six months, and hospice care may be provided at home, or in an institutional setting either specifically dedicated to this kind of care or one providing other functions (such as a nursing home that can provide many kinds of care).
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Rabanette Feb 17, 2020
Well done. Thank you for defining the terms. Usually that's the best place to start.
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Palliative Care is for people who need help managing chronic symptoms ie pain, shortness of breath. Hospice is reserved for end of life care for someone that is believed to not have a life expectancy greater than 6 months because of a terminal condition, be it cancer, dementia, or heart disease. Unfortunately you give up certain services when you go hospice, so be clear about what is and isn’t covered under hospice.
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My mother recently went on Palliative Care in her AL facility. She is not ready for hospice at this time. The NP came and accessed her. While the NP and I talked and did the paperwork, my mother sat in her chair with her doll and ignored us, completely. She (NP) said that my mother is "farther along than I realize." Mom is late stage, 6C, according to the FAST scale of Alzheimer's.

I was confused, too, with the difference between Palliative Care and Hospice. The NP went over her meds with me and asked questions, regarding Mom's eating habits, toileting, and her overall activities of daily living. Palliative Care, in my mother's case, will come and visit her every two weeks, more if she thinks it's necessary. The NP has taken Mom off of Xarelto, because she said that at this stage, the risk of Mom taking it is worse than what the drug is preventing. The NP told me I could call her anytime with any concerns I have. She also told me that she wanted to "observe" Mom for a while to see if she will be ready for Hospice services sooner rather than later.

My mother has declined considerably since she moved into her AL facility almost 6 months ago. She will be 85 in March.

Hope my story helps.
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busymom Feb 17, 2020
Sorry to hear about your mother. I’m sure you feel a sense of loss already as you view her decline and realize she’s not the same person you grew up depending upon. Now you’re doing the “mothering” to her and it’s hard. It sounds as though you’re doing a great job in looking out for her best care.

My mom had Parkinson’s disease and passed away over 7 years ago at 82. She was on and off of hospice care, because she sometimes improved. At the end, she had pneumonia and I was able to get an ER doctor to order hospice and send her back to her room in her nursing care facility where she was surrounded by sweet, caring nurses and was only 2 doors down from my dad. She was kept comfortable in those last days, and I was so grateful for all those who cared for her.

Just tweaking medicines (which Palliative and Hospice doctors/nurses do), can make it more pleasant for a patient. My uncle who was on blood thinners for years, should have been taken off the ones he was taking. He ended up with major intestinal bleed and passed away 4 weeks ago. Blood thinners only help to a certain point, and then the side effects can become dangerous. I’m glad the NP took your mom of Xarelto.
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Palliative care is available when the patient doesn't yet qualify for hospice. It is more limited time and the services are different. For my mother, we used palliative care in her late (but not last) stages of Alzheimer's. She was given Occupational and physical therapy with visits each week. She was also given bathing care. Once she moved into her last stages of life, hospice came and there they supplied a nurse, an aide and many of the medical supplies an equipment. Both services are excellent and provide assistance to the caregiver in the home.
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We had both for my Mom recently and it truly depends on how much care do you need? We had more care with palliative care than hospice. Hospice only came once a week while home health came twice a week and cna’s three times a week. Hospice does have a Hospice House but the patient has a very limited time that can stay. The personnel from both agencies were kind and gentle with Mom. Do some investigation. Before you decide. Hospice can be different in different places. God Bless.
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I have never heard of Palliative but in hospital doctor told me with hospice I would get the help I didn't have now. That was what she said that was not reality, there was no help coming from Hospice where I live the equipment and the meds and the number to call and I used it and kept nurse on the phone while I gave dad the meds . If you wanted aide or help that you had to get yourself.
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jacobsonbob Feb 17, 2020
Do you live in a remote/rural area? Services taken for granted in a city or urban area are often nonexistent elsewhere.
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Have the evaluation done for Hospice. If he qualifies for Hospice ..great. You will get a LOT of help and equipment and supplies. If he does not yet qualify for Hospice accept Palliative. You will have help and some limited services compared to Hospice but the staff will be observing for signs of decline that would enable them to change the status to Hospice eligible and then you would get all the help and services that Hospice can provide.
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Judysai422 Feb 17, 2020
Great plan suggested. When they do the eval, get specifics as to how services differ. In AZ, palliative care meant I still had to take my mom to all of her doctors appointments and her PCP was still in charge. With hospice, the Hospice doctor became her PCP and I no longer took her to her cardiologist, pulmonologist, urologist, PCP and even dermatologist. The hospice nurse came one or more times per week, managed her meds, got her access some pain meds for her joint pain that her PCP would not prescribe, took her off some meds. They provided her oxygen, nebulizer and other supplies, including meds, free of cost. They gave her a shower twice a week and were far better at doing so than the AL staff. They also come to her within an hour if she is sick to assess. My mom has dementia and severe aortic stenosis, the latter was what qualified her for hospice. She has been on hospice for about 6 mo. and shows no sign of dying any time soon, but the attention she gets and the support the family gets is very helpful. For me, not dragging her to multiple doctors has been a godsend and reduced the stress on me and my father enormously. Now when she gets sick, we call the hospice nurse instead of rushing to urgent care or the ER.
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busymom Feb 17, 2020
Thank you for sharing this article. I have had friends who have opted for Palliative Care versus Hospice Care. Eventually when their disease (in this case, cancer) progressed, the care team providing the palliative care “graduated” the patient into hospice care. The article you highlighted, explains the differences and the benefits. In my experience with both types of care, they are extremely beneficial to the patient and the family when they are done by a skilled, caring team.
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i have had experience with both palliative care and hospice with my late mom with Alzheimer’s who lived with us. We were having a Drs office that provided home visits by a nurse practitioner that was a wonderful way for them to see the ‘true’ mom. I reached out to our large non profit hospice here in the Phoenix area for an evaluation but she did not quite qualify. They instead have a palliative program for dementia patients that was absolutely wonderful. They tracked her so they knew when she could transition to hospice. None wore any name tags or identifying shirts so I just always told mom they were from the ‘Drs’ office. Good luck!!
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Whatever they grant you, take it. Both services help. Hospice is just more care, more frequently.
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I thought home health nurse was palliative care. Palliative care will provide a nurse practitioner to come in and take vitals, check the person for anything, and write it down, once a week or every other week, and report to doctor. They will also provide medical supplies as needed. Basically, you do not have to take patient to doctor, they will come to you. This helps especially if they are wheelchair bound.

Hospice, "end of life", will provide a nurse practitioner, a team of people to come in every week, one to bathe the person once or twice a week, a nurse every week, and a religious person of their faith to come in if you want. Hospice is not only for the patient; they are there for the family, you, the caretaker, too. . They will listen and talk as long as you need.

This also means, that they will evaluate the patient every 30 days or so to see if the patient still needs these services.. They can graduate out of these services.. Mom did 2 times, the last time, she went "home".

Mom was on hospice: aunt is on palliative care.

DOCTOR SHOULD REQUEST HOSPICE. THEY WILL EVALUATE AFTER 30 DAYS.
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anonymous1010889 Feb 14, 2020
That’s interesting. It sounds like there can be considerable differences amongst palliative care programs across the US. Our palliative program required we go to their office for medical/pain monitoring every 2 weeks. We opted for hospice so we could have them come to the house instead. It’s been a good experience so far, one year later.
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So far as I know, in the international medical community, hospice and palliative care are the same thing. The USA has the 6 month life expectancy requirement for hospice, which seems to be much better funded. Palliative care is the same thing without the time component. For example I have turned down late-years surgery for my back, but I get help from painkillers and occasional sleeping tablets. That’s one type of palliative care, as they help but won’t ‘cure’ me, and I don’t expect to die any time soon. Here end-of-life care is usually called palliative, not hospice, and there is no time limit rule. It’s just words.
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worriedinCali Feb 14, 2020
In the US, it is not a requirement that life expectancy be 6 months.
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I have seen so much benefit from calling hospice in.

If Jerry isn't seeking treatment for what ails him then hospice would help you care for him and provide medical equipment for his comfort, like oxygen, hospital bed, bath aides, skin ointments and other things. He will be able to continue any medications that he is on and if he decides that he wants heroic measures then you fire hospice and go to the hospital. You still have choices.

Some people end up getting better because they are getting the rest and care they need. It doesn't necessarily mean a death sentence, but it is intended to help people that have been diagnosed with 6 months or less to live.

I think palliative care and hospice care are the same thing in some areas. Just taking the fear out of the verbiage used I suppose.
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Vivian711 Feb 14, 2020
I do love your name. Thank you for the sound advice.
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