I'm going to bed soon, but tell me about hospice

[StJess80]

We've been told to start examining some options for my dad.

1) will he have to move out of his home?
2) does he have to stop working? (I ask this because my mom is out of work, and I know that given that, he will work as long as possible.)
3) Does treatment have to stop? I know they will administer pain meds, but would they administer chemo?

I am going to bed now, and will be back in the am to answer any questions you might have.

[chia]

I don't really have personal experience with hospice, but have always been under the impression that it's more of a palliative care/pain management program...

Sent from my Nexus S 4G using proboards

[sarahbear]

I work for hospice.

1. No, hospice can be provided wherever a person resides.
2. I don't think there are any rules about this. Just about traveling. He can still work. Hospice is a medicare benefit, covered 100% under that. Is he getting medicare? Some commercial insurances have a hospice benefit, but it might require a copay, or have a limited time frame or even require you to use a particular hospice. Medicare will allow him to chose any hospice and have no hospice related costs.
3. Treatment must be for comfort measures and not for curative purposes. If he is getting chemo to try and get better and cure his illness, then no, he isn't hospice appropriate. If he is getting chemo to, for example, to shrink a tumor that is causing him pain, then it can be covered, but it is up to the hospice he signs up with whether they will approve it or not. He can still see his regular doctors for anything unrelated to his hospice diagnosis. Hospice wouldn't pay for those visits, but his Medicare or regulr insurance would.

He has a choice of any hospice in his area. In my area there are almost 17 hospices. Interview a few. They are not all the same. Look for a non-profit hospice...a true non-profit hospice.

Feel free to ask me ny other questions, or PM me too.

[sarahbear]

Also, hospice is a 6 month benefit that can be renewed for several years if necessary. It is meant to be more than the last weeks of life. This is the biggest myth out there about hospice and the one that's hardest to get people to understand. Do not wait until there is only two weeks left. You, your family and your father will benefit the most the sooner you sign up--- if that's where he is at with his illness.

[Roc A Bee]

I'm going to leave the answers to the other ladies, but wanted to say I sorry to hear that.

[jackie011]

I'm surprised the doc is putting this on you. When my father (who had pancreatic cancer) went into the hospital at one point the doctors told us that he wouldn't be going home and that they had contacted the palliative care staff of the hospital. The woman in charge of that department came in and met with us (my mom, my sister & me), went over the process, asked if we'd rather do this at home, and within a few hours he was under their care. I can't imagine what we'd do if we were told to shop around at that point!

If your father is still working, though, it seems like you're at a different point. From my understanding, he would not have to leave his home, but would no longer be receiving treatment for the illness, just comfort.

I'm so sorry you are at this stage.

[daringmiss]

As my mother has Stage 4 breast cancer and will eventually need hospice, I made a few calls about it today.

I was told that hospice can be engaged when aggressive/curative therapies are no longer being pursued. The patient can receive hospice for up to 6 months. If the patient is still alive at the end of those 6 months, their case can be renewed for another 6 months. If they decide to pursue treatment again, hospice is stopped but can be re-engaged at a later time.

I am saddened to hear of people's negative experience with hospice. Every experience that I have had with hospice (friends, relatives) has been positive.

[basilosaurus]

I'm sorry you're facing this. I've dealt with hospice with my mom (when I was a kid), with my MIL a couple years ago, and as a student nurse (the last 2 were simultaneous which was kind of a mindfuck but highly educational), and I have nothing but good to say. I really can't add anything that sarahbear didn't say, but I'll write too much anyway.

You're supposed to have a prognosis of less than 6 months. My MIL got that 20 months before she died. However, she didn't get hospice until her last few days because she was focused on curative rather than palliative care. Like sarahbear said, palliative doesn't mean stopping treatment necessarily. Chemo or surgery may be considered palliative. There is also sort of a semi-hospice in some places for people with a 12 month prognosis although I'm not 100% sure that's available in every state.

As long as a person is able and willing to work, they're allowed.

Yes, shop around for where you find the best fit. But at least where I did my clinicals, we had monthly informal meetings with other hospices because everyone was generally on the same page. Administration was really the main difference.

I kind of feel hospice is a generally positive thing. It's so hard to see people chasing every cure no matter what it does to their bodies. There's a kind of peace I've seen in accepting hospice. I tried to convince my MIL for months before she accepted it, and she literally was only on it 4 days before dying and really didn't get the benefit she could have. My mom was on for I think 4 months, and even in my hazy little kid memory, I could tell the difference in a big way. Other friends I have who had experiences while young have similar memories of how awesome hospice was to support not just their families, but the client. IDK, it's hard to articulate.

You generally have the option of staying at home or going to a facility. Hospice will provide for things like a hospital bed at home and other equipment like oxygen. However, there are hospice units at hospitals. My mom died in a hospital due to her choice (and hospice even paid for her ambulance transport), and my MIL did the opposite.

Anyway, I wish you the best. See how I wrote too much as I expected?

[cep1976]

Your questions have been answered by other posters, but I just wanted to add that we had a truly wonderful hospice experience with my grandfather who received in-home hospice care. I cannot recommend it enough. It was such a humane way to receive treatment and for him to die.

[sarahbear]

Sept 17, 2012 23:39:13 GMT -5 RockNVoll said:

Sarahbear, I would love to know more about hospice. MIL will likely need these services in the next few weeks to months. What are some things we should look for? How is it decided whether she goes to a facility or can stay in her home? What do you mean by true non-profit and how do I tell if one is fake? Sorry for all the questions but any advice would be MUCH appreciated!

I will definitely answer your questions.....but give me uhtil end of day when I have more time to type things out. I'm on maternity leave and have a newborn in one arm most of the day. LOL.

[pugz]

hospital social worker checking in, I set up hospice referrals for many of my patients.

1) will he have to move out of his home? No, one can be on hospice in several different places. Home, a nursing home, an inpatient hospice facility (sometimes called hospice houses), and in the hospital (though that is typically just for very end of life treatment when transferring is not possible). Many patients start at home, then move to a nursing home or hospice house when their needs are greater. The big thing to be aware of with hospice in the home setting is that they do NOT provide 24/7 care. Some hospice agencies offer crisis care, where they have a nurse out 24/7 the first day or so while the family gets used to the care needs of the individual, but if a patient needs 24/7 care they have to go to a facility or hire private duty caregivers ($$$$). Medicare will pay for hospice care but not for the room and board at a nursing home if a patient is on hospice.


2) does he have to stop working? (I ask this because my mom is out of work, and I know that given that, he will work as long as possible.) I am not sure on this one as I've never had a hospice patient that is still physically able to work, but most of my patients are elderly and already retired.


3) Does treatment have to stop? I know they will administer pain meds, but would they administer chemo? Typically yes, you do have to stop curative treatment. However, you do not always have to be a DNR, though many agencies do require a DNR to treat.

There are good and bad hospice agencies, more good than bad I'd say. I usually give families the names of 2-3 hospice agencies that are most commonly recommended by my patients. The hospice agencies can do an informational visit in the hospital or the home to explain their services. Some hospice agencies are great in the hospice house environment, but terrible in the home setting. There is a big name one locally that I don't feel comfortable recommending for in home hospice but it is the first place I'd recommend for a hospice house experience.

[pugz]

one last thing, patients on hospice CAN go to the hospital whenever they want, but when they go through the ER may have to sign paperwork to revoke hospice temporarily while they are in the hospital. Having a living will/advance directive are SO IMPORTANT. Hospice can help with that paperwork if he doesn't have it already.

[Deleted]

Aww, StJess, I am so sorry to hear about your dad. We had a fantastic experience with hospice care when my dad was sick, so I'll answer as much as I can.

He absolutely doesn't have to move out of his house. This is one of the best things about hospice IMO. I think that there are some inpatient hospice centers for people who aren't able to stay at home for various reasons, but I think most people stay at home. My dad wasn't able to climb the stairs to the bedroom, so they set up a hospital bed in the living room. I'm not sure exactly how they got the hospital bed; they rented it from somewhere.

I don't know about working. My dad was retired when he was sick. He still served on the local board of education until the day he died, though, participating in meetings via conference call.

My understanding about hospice care is that curative treatment typically stops, but there may be exceptions to this. However, sometimes chemotherapy is considered palliative treatment. My friend's dad still had chemo when he was in hospice care as a way of controlling his pain. I think you typically have to go to a hospital or cancer center to receive chemo because it's often IV drugs.

Best wishes to you and your family. I am so sorry that you have to go through this.

ETA: Just read the replies and see that my answers are very late/redundant. I do want to say that starting hospice care was one of the best decisions we made re: my dad's illness. He had undergone surgeries, chemotherapy, and radiation on and off for four years, and he was tired of fighting it. By the time the cancer spread to his brain, it became clear that curative treatments were no longer helping. He was in hospice care for four months. They were wonderful. He passed away in the middle of the night. We called the hospice contact, and someone immediately came to make all the arrangements (call the funeral home, fill out paperwork, etc.) I highly recommend it.

[pugz]

Sept 17, 2012 23:39:13 GMT -5 RockNVoll said:

Sarahbear, I would love to know more about hospice. MIL will likely need these services in the next few weeks to months. What are some things we should look for? How is it decided whether she goes to a facility or can stay in her home? What do you mean by true non-profit and how do I tell if one is fake? Sorry for all the questions but any advice would be MUCH appreciated!

-Look for an agency with a good reputation in your area, the social worker at the hospital and even the doctor can give you a few names of ones their patients have used and recommend. A hospice agency with a chaplain on staff, social worker, and obviously nurses and a doctor with extensive pain/palliative medication knowledge/experience.

-the doctor, either PCP or hospitalist, should be able to help you determine if home is a good plan or if a facility is better. Generally if there are less than 2 weeks left, a hospice facility is appropriate, but many want to pass at home, and hospice agencies will do their best to meet those preferences. However they can't provide 24/7 care at home, and some families are not comfortable without a nurse there all the time, in which case a facility is a better choice.

[pugz]

Sept 17, 2012 23:49:45 GMT -5 jackie011 said:

I'm surprised the doc is putting this on you. When my father (who had pancreatic cancer) went into the hospital at one point the doctors told us that he wouldn't be going home and that they had contacted the palliative care staff of the hospital. The woman in charge of that department came in and met with us (my mom, my sister & me), went over the process, asked if we'd rather do this at home, and within a few hours he was under their care. I can't imagine what we'd do if we were told to shop around at that point!

If your father is still working, though, it seems like you're at a different point. From my understanding, he would not have to leave his home, but would no longer be receiving treatment for the illness, just comfort.

I'm so sorry you are at this stage.

unfortunately many hospitals don't have a palliative team When I worked at the VA they did and it was great. There was a nurse and a doctor that specialized in it, met with the patient/families, and set everything up. Where I work now, the doctors (either the PCP or the hospitalist or specialist) consult the social workers if hospice is appropriate and we set it up. The doctor/hospital cannot dictate with hospice agency you use. There may be one affiliated with that hospital, but the family has to be presented options.

[drloretta]

1. No. Most hospice patients I know still live at home.
2. No idea. I've never heard of someone with <6 months to live who's still working
3. I don't think so.

I would contact some hospice programs and see how they answer your questions.

My mom is a hospice volunteer--she'll come and be the "bridge" between caregivers, or just sit with patients. She loves it. Her sister had hospice and it was a great experience.

[karinothing]

My mom was in hospice at home. It was only for a few weeks but she went downhill very fast. I am going to admit that I am in a daze and don't remember much about it. I know that if we needed something they were very responsive. I remember hating them I think becuase of the fact that they represented my mom dying and I wasn't ready to accept that, but that wasn't there fault.

I think they really helped out my dad, so that is good.

When she passed I am pretty sure they sent a counselor type person to our house within 20 minutes. I appreciated that.

[mbcdefg]

I'm sorry you are going through this ({) (})

My experience:

My dad was very insistent on being able to be home for his final days. He was tired of being in and out of the hospital.

He had stopped working a couple months prior because he broke his leg and was bed-ridden. He had intended on going to physical therapy to possibly go back to work within a few months, but that was before the cancer was discovered to be way too advanced.

He came home under chose hospice care specifically because he had decided to stop chemo treatments. He got pain meds and morphine and all that.

Just wanted to add that it brought him some comfort and dignity in those last couple of weeks. He really just wanted to be home and live as "normal" a life as possible until the end. If you find an organization that works for your family, it's such a Godsend.

[statlerwaldorf]

I'm sorry. My grandma recently started hospice. The hospice agency is very good at dealing with these situations.

1) will he have to move out of his home?
It depends on his condition. My grandma was given a visit from a home nurse a couple times a week, but she needed more care than the family could provide. Hospice provided her with a walker, shower stool, and other things for her house. Now that she is in a nursing facility, the hospice nurse still visits. Hospice does not cover nursing homes, so she is paying out of pocket. Her insurance will only cover rehabilitation stays and she cannot be rehabilitated. A friend of mine's husband was able to stay at his house until the end, but she was retired and physically able to help care for him.
2) does he have to stop working? (I ask this because my mom is out of work, and I know that given that, he will work as long as possible.)
It depends on his condition. In order to qualify for hospice, they usually don't have much time left. Cancer takes everything out of you especially if it's aggressive.
3) Does treatment have to stop? I know they will administer pain meds, but would they administer chemo?
In order for my grandma to qualify for hospice she could not be going through chemo.

[dexteroni]

I'm so sorry you're going through this. I couldn't possibly add to Sarahbear's wonderful advice, but I will say that hospice was absolutely wonderful to my dad. It was only for a short time, but even in those few days they helped him and our family in countless ways. Hospice nurses are magical people. My brother ran into one of my dad's nurses at the store almost a year later and she remembered him, my dad, and our family. I don't know how they find the strength to do what they do, but I'm so glad they do.

[StJess80]

Thank you for all of the replies.

We've been told that he has 6-9 months, which is probably why it has been brought up. He is still doing chemo, but not radiation. I believe that is because the cancer is too wide spread and radiation would cause more harm than good at this point. They are also researching a few pills that are newer to the market, and could take the place of chemo. So, I don't know if they'd view that as trying to attain a cure, or just pain management. From the dr reports, I believe they have said that there is no cure though...

Right now he is working. He worked through it the last time, which was 3 years ago, but the cancer is much bigger this time around. He is not on medicare/medicaid, but my mom might be looking into that.

I am glad to hear that he wouldn't have to leave his home. Like I said, right now he is able to work and all of that, but this sort of thing can change so quickly that I'd hate for him to have to be moved, leaving my mother alone.