HI there,
I have a question aboout hospice. Yesterday, dad with cancer found out he is eligible for hospice care. Mom( stage 6) and dad are both at home. We are going to have to have a caregiver for mom. At this point, sibs and I are 24/7 taking turns.
But, I am wondering exactly what services hospice will provide for my dad.
Is any one familiar with this? ?

Sorry about your Dad and your Mom.

Hospice will provide a team approach to the care of your Dad. It is about "Comfort Care" rather than curative care. A nurse will visit anywhere from 1 x a week to daily if need be. They will provided a CNA to bath him, change his bed perform ADLs, assist him with eating when necessary (from 1 to 5 times a week) depending on his needs. They will provide a Social Worker to discuss psychological/social needs of your Dad and your entire family, they will provide a chaplain for spiritual needs for your Dad and your family. They can provide a volunteer to sit with your Dad or read or things like that.

Hospice is a wonderful service for families. They can also provide continuous care for a crisis situation and respite care.

Good Luck.

Please, let us know how you all are doing.

Hospice may be wonderful in some areas of the country. It's not where I live (NJ). Here, you have to be within 6 months of dying (although it's OK to recover; hospice just ceases if you do), and those are the hardest months if you're doing homecare.

You get a nurse for an hour or so a couple of times a week, but all the nurse does is check vitals, order meds and other supplies (hospital bed, oxygen, etc.), and talk to you about any issues of care you may have. She's gone in an hour.

I was also entitled to an "aide" once a week who would bathe my father for me. But I had to bring in a podiatrist for his toenails.

Of course, I was always able to call hospice if I had an issue or needed a nurse sent to my house to deal with something.

Here's what I didn't like about hospice:

- If I needed a nurse, particularly at an off-hour, it could take a couple of hours before one would arrive.

- If the nurse ordered refills of three meds or ordered different meds, they would arrive in three separate shipments over the same day. Oxygen was delivered by someone separately, etc. The days were difficult enough without having to stop and answer a door and sign for something five times a day.

And, of course, you don't get any respite with hospice. I literally fell into bed at 5am and was up again before 7am for three solid months, because during the day there were phone calls (from "concerned" relatives and friends), visits from same, deliveries from hospice, calls from hospice, meal making, cleaning, all added to the work involved in caring for someone who needed help toileting, eating, having meds administered, etc. Then, at night, when the calls and visits would stop, my father would sundown (and have to be watched or dealt with depending on what he wanted) so I'd be unable to get more than a catnap or two before collapsing in a stupor at dawn.

I admit I also made it worse, because if he did sleep (usually due to his drugs), I'd take advantage of the time to clean or work or whatever--which I shouldn't have done. (I should have slept--except that the phone or the doorbell would inevitably ring so what was the point?).

If you can afford it, pay for a night nurse. At least a few nights a week. (Unless you have relatives who will help you.)

Hospice is providing my mother (at home with me) with an aide 2hours/day M-F to wash her, dress her and feed her breakfast. My chance to take a walk or go food shopping.
Hospice only work with specific agencies that understand hospice care. They told me that I should feel that the aide they send cares for my mother with training and with human kindness. (She does.) The very first aide who arrived was unsatisfactory and they immediately replaced her.
In addition to the minimum once/week visit, The hospice nurses are on call 24/7-- they'll talk with you about health issues, try to solve problems over the phone and then will come --at any hour--if needed. They provide meds in liquid form (with a measured dropper) that they know can make a patient comfortable and, when you call at 3 in the morning, they may guide you as to which will be helpful.
Hospice nurses may not be able to guarantee exact times they'll be there. They are tending to the sick and dying and sometimes another family gets priority. But they will be there for you.
I hire additional private pay aides but hospice has provided a baseline of support that is invaluable (and is totally covered by Medicare).

Hi, I'm in NJ, too. We just started hospice for my MIL a few weeks ago. An aide comes daily for a couple of hours to the assisted living where MIL resides. A chaplin has been very instrumental in getting my SIL on board with understanding that MIL is not going to "get better". MIL's depends and ensure are now covered through medicare, where we had to pay out of pocket, in addition to her assisted living fees up to now. So far we are very happy w/ hospice. It's true the person is supposed to be diagnosed by 2 physicians that they are not likely to live beyond 6 months. However, after 6 months hospice can continue for a series of intervals.

Instead of giving treatment for dad's cancer, the first doctors just said to "sign up for hospice". And they didn't explain what that means.

Then, bit by bit, I found out that means: You have to give an DNR (Do Not Resusitate)--if the patient gets into a situation where you need to call 911, ambulance will not take him to the hospital (if the situation is caused by the primary disease that got him eligible for hospice--even if he's having massive bleeding).

They do provide care as mentioned in the previous entries. However, they will not provide a caregiver, as in someone to watch the patient all day.

I was told the one can sign up for hospice and get out if he changes his mind.

The thing that made me uncomfortable was the DNR order.

Hospice replaces the normal Medicare Part A. This means that the person will not be treated in a hospital for the terminal illness. They can still be treated for another problem. It is used when you have accepted the fact that the person is dying and are no longer trying to treat the illness but just providing comfort and pain relief.
Here is a link to the Medicare bulletin that explains hospice:
Hospice Care

You usually don't sign someone up for hospice until you and they are ready for DNR: you've decided that you don't want to treat the disease aggressively but rather want comfort care for your LO-- to allow a gentle dying.
Susan-- You need to ask the doctors to be more direct with you.
"Sign up for hospice"
may mean that they feel there's no treatment they can offer your dad that won't be very painful and ineffective.
But to be comfortable with hospice and DNR, you need to understand what his true health situation is --and if there are alternatives worth pursuing. Ask the doctors to be more forthcoming with you.

Thanks to all . This is a difficult situation and I am treading on new ground here. I now know what kinds of things to ask and to expect.
It is kind of a shock to go in two weeks from a cat scan and "spots" to hospice care discussions.
I will be visiting the doctor next week to discuss care. From what I already understand, the cancer has already spread far and quickly.
There is avery small chance that depending on the outcome of chest x rays and a pet scan that he can be given chemo. I don't quite understand and am only getting my info 2nd hand.
They told him yesterday that 3 months would be a gift. So, we do fit the criteria. I don't have any problem with a DNR, neither does my dad. We have had many discussions about that same situation. I believe he has it in writing amongst his papers.
He wants to be at home, not in a hospital.

Ma's petunia California has this program dealing with end of life issues: www.polst.org).

Hospice is a program that provides medical, practical, and social support for patients and families in the terminal stages of various illnesses. The "life expectancy of six months" guideline is just that--a guideline. Each disease has its own set of diagnostic criteria to help physicians decide if a person will be hospice eligible.

Medicare pays the hospice a per-diem for each patient they have. From this amount the hospice must provide certain things for each of their patients: medications related to the terminal illness, nursing visits, aide visits, social work consults, chaplain visits, a volunteer department, equipment such as wheelchairs/walkers, and whatever supplies that hospice decides they can provide for the patient. This is why some hospices provide some supplies that others don't--they have to decide which supplies they can provide while still providing the other services on the amount of per-diem money Medicare pays them.

Some hospices, for example, may provide fancy cloth bed pads but not be equipped to provide IV medications if needed (which can be very expensive, both in medication cost and the equipment and staff to administer and monitor them.) Some may decide to provide IV medications but not bath wipes. Some, especially if they have a large contribution/fundraising source, may provide both. However they divide up the money allowed by Medicare, they have to try to balance it out so that they have enough reimbursement to care for both their most and their least expensive-to-care-for patients. It does make sense to ask upfront what's provided and use that information in your decision-making process. If my loved one had pancreatic cancer, say, instead of Alzheimer's, IV medications would be a big deal. For Alzheimer's, I would think incontinence supplies would be a big deal.

They aren't set up to provide large amounts of hands-on care. They're set up as an umbrella of support for families that are struggling to care for terminally ill family members, whether at home or in a nursing facility. Nursing visits are generally a time or two a week, with more if the patient's condition is rapidly changing, and aide visits 2-3 times a week. Respite care is generally reserved for caregivers who have an emergency or are exhausted from the long hours of caregiving. This may vary if the individual hospice decides to use a larger portion of their per-diem, for example, on aide visits or whatnot. The hospice may offer physical therapy visits or massage therapy visits if there's a documentable reason for them.

The thing you have to remember is that hospice is not set up to provide 24-hour hands-on care, as wonderful as that would be. It's more like a consultant service to allow the primary caregiver, who will indeed be doing the bulk of the work, to care for the person at home. I think it would be fabulous if more assistance could be provided; this problem is that so far, we in this country are unwilling to pay for that. Hospice employees can't work for free, and Medicare and insurance companies will only reimburse the hospice for so much. Anybody on this list who's hired in-home assistance can tell you that even just 8 hours a day can run up to a thousand dollars a week. It surely does help to be rich. Excuse me while I go check my money tree in the backyard....

The idea of hospice is to make the patient as comfortable as possible, and to support the patient and family, emotionally and spiritually, during the final months of life. Hospice does not provide curative treatment for the terminal condition, but offers palliative care, which gives the relief from pain and other symptoms. And this care can be provided in patient's home, or in the hospital, or in the nursing home.

On of the strengths of the hospice model is that patient care is individualized. For each patient they develop a care plan which identifies what types of care and how much care the patient needs, and they will not make the patient die faster, they will only provide compassionate support to allow the patient to live his remaining days in comfort and dignity. Being on hospice means a person wants to have the best quality of life for as long as he is able.
And also the top priority of hospice is meeting the needs of the patient and the family. The family is at the center of all decision making..

Everyone gave wonderful input re hospice. My mother's hospice followed her right into the NH for her care. My mother's qualifying hospice diagnosis was "Dementia", Stage 7.

The six month to live hospice qualification slides back and forth. The hospice will continue to re-certify care as long as the medical need for their service is present.

No one goes into hospice that plans to be resuscitated and placed on a ventilator. Hospice is for those who decide upon, "no heroic measures." Hospice still treats blood pressure, diabetes, infections, heart issues, etc. Hospice does NOT mean no treatment.

Hospice pays for most all durable medical equipment. Many hospices pay for underpads and diaper supplies. Check on this.

My BIL was dying of cancer, and the first hospice did not provide ANY supplies other than bed and wheelchair. They also were scant on visits. We contacted a second hospice which provided ALL supplies including incontinence supplies and who were much more on the ball, so we made a change.

Ask about services and provision of supplies before signing on.

Also, there are instances in which a patient IS brought to an ER. Ask your hospice nurse about this. If one is going to change one's mind and require resuscitation, then there is no need for hospice services.

Also, if someone is on Medicare and they don't care for their hospice, you can make a change; BUT only once in each certification period. Ask your hospice nurse about cert periods.

Most every hospice DOES have respite care at a NH they contract with. If you become ill or are overwhelmed, the patient may be placed short term in order for you to regroup. Ask your hospice about this.

My mother's hospice was a wonderful adjunct. They were available 24/7. Sometimes times had to be adjusted for a visit, but it was always secondary to a patient dying that the RN needed to be with. They do the same for our loved one when the time comes.

I liked the input of the social worker who was a dear as well as the chaplain who takes things from a family support aspect.

Also, nothing is written in stone. If you find you don't want hospice, you can always cancel them. However, once everything is in place, you may find them marvelous. I did.

And, oh yes; if you get an RN or an aide that just doesn't suit, you can call the hospice supervisor and request a change. This is something that happens and you will not be thought less of.

I wish you the very, very best. Let us know how it is going.

Johanna C.

Ma's petunia:

I suggest you talk to several doctors--get 2nd, 3rd, 4th opinions if needed. I would not accept the first opinion as the ultimate truth. My dad's original doc's did not give full disclosure of treatment options. I had to talk to several doctors (of different oncology disciplines) to learn of options.

Brightwings:

The doctors who said to just "sign up for hospice" did not make any provisions for a "gentle dying". They were just going to let him bleed to death (and told me to put towels on him) or let him suffocate alive--that is not what I'd call a gentle dying. In my case, telling me to "sign up for hospice" was their way of brushing off the responsibility to someone else.

Dad is getting some treatment now--hopefully it is curative, but at least palliative.

His first doctors sound like they were very rude and dismissive...that they didn't know how to talk about dying andwhat the options are. Yes, always a second opinion.

Hospice would not have let your dad bleed to death or suffocate--they specialize in knowing how to alleviate symptoms and would have discussed with you what they could offer to help. They have years of experience with helping cancer sufferers. Sometimes it's the medical treatments for cancer that cause the worst side effects (rather than the disease itself).

After treatment, your dad may still be eligible for hospice. Just talk to them and see how what they can/cannot offer. and then choose...

One very, very big problem that too often leads to peoples dissatisfaction with hospice is that they simply DO NOT UNDERSTAND HOSPICE!!!

Worse yet is that DOCTORS don't understand hospice. Many are most inappropriately telling patient families (who in truth do not fit criteria for hospice) to consult hospices. And even worse than that are the situations where one SHOULD be on hospice, yet their doctor never advises or offers to refer for the consult.

I work for a hospice as an intake nurse/coordinator. I see multiple referrals per day, and we work pretty hard to get their info, orders, etc., and put in lots of administrative time checking out their insurances (not just Medicare) so that we can be sure the family understands if there will be any copays whatsoever (so no surprises). However, almost NEVER is another insurance involved once the patient is determined to be truly hospice appropriate). We put in a lot of time administratively, and schedule our nurses to make home visits..........only to make contact and find that the patient was totally not appropriate for hospice, and the family members having completely unrealistic expectations. It is very expensive for hospice companies who take literally hours of work from the intake to the actual home or hospital visit just to assess, qualify, and implement a plan of care.................only to realize the family can't all be on board, the patient was referred inappropriately, or worse...........dies before we even had a chance to start.

Hospices ( i.e. individual companies ) are NOT a ONE-SIZE-FITS-ALL. And "one company" does not a hospice make.

Thank you- even more enlightening information, Joanna c and Diana and Mgm. I didn't even realize that there would be more than one hospice to call!
I have lots of information so that I can ask some good questions.
With every test we are getting more and more information. They feel it started in the lung and spread to the kidney and liver. He cannot eat much at a time, throws up, has lost 20 pounds in a month. From the biopsy, they said that it is a fast growing cancer. His primary and oncologist feel that 3 months would be a gift. His liver is badly swollen and not functioning properly. I personally don't feel that any treatment would bring about a cure from all the info I have. Whereas normally, I would agree about the 2nd, 3rd and 4th opinion, now I feel that to put dad through this would be hard.
Thanks all so very very much.

Hi Everyone, my dad passed on 9/16, I hate to say this but hospice did not do a lot for us. He was put on hospice in Juce, and we only heard from the nurse 3 times. I called and asked several times for her to call me, but to no avail. When she did call she would state my father would talk to her and eat some food. Both of which were not true. I even asked her if she had the right patient. Hospice was called on Mon 9/14 in the am, and was repeatedly called the next 2 days. She showed up 1/2 hr before he passed. Then had the nerve to state he went fast. I live south of Boston, and will never recommend them to anyone. Once again if it weren't for the wonderful nurses in the NH helping us through this it would have been even harder. Make sure you advocate for your loved one, don't be afraid to be pushy.

My Uncle was diagnosed with late stage lung cancer early this summer. My aunt took him home from the hospital only to realize that she needed equipment ASAP. She called around 9 at night and at midnight, hospice was there with a hospital bed, oxygen, and medication. The nurse stayed to help educate my aunt. My uncle ended up dying two days later, but my aunt was really pleased with the quick response she got from hospice. They took forever (months) to come and pick up their supplies though. But, my aunt was really grateful for hospice. I guess it all depends on the particular hospice company that one uses.

quote:

Originally posted by jellybeans:
I guess it all depends on the particular hospice company that one uses.

This is the whole point caregivers/families need to know. You have a right to be picky. And you have a responsibility to be informed. If you don't like one hospice.....insist on another.
IT IS YOUR RIGHT.

Know what "hospice" is. Although you may be very stressed and grieving, seek realistic answers, and have realistic expectations.

"HOSPICE is just one tier, a level of caregiving service."

"Hospice care providers" are independent COMPANIES"

The idea, the mission, the definition of what "HOSPICE" is all about is Palliative Care and Support.

Hospice companies are "COMPANIES," who all have their own business model, and not all would make "Hospice" proud.

I never knew there where so many things to ask , I have heard the word and had a general idea of what they were there for. It sounds like the right company could be a good support service.
Its good to know all these things. I have no idea what kind of care services dad will need, I imagine that I'll find out soon enough.
I sure wish though, that I didn't need to even wonder what hospice does. What a month.

Brightwings:

The doctor that I talked to is a hospice doctor. No advice on how to alleviate symptoms or to provide "gentle dying". 1)It was either let him bleed to death at home (and let the house look like a homicidal scene, just get young kids out of the house) or let him bleed to death in a nursing home. 2) In order to prevent being suffocated alive due to airway obstruction, then shoot him up with morphine to make him stop breathing before that happens. (I'd rather call Dr Kavorkian, in that case.) 3) Deny him food to starve him to death. How could I do this while he's alert and all his organs are functioning fine???

I personally know 2 people who was diagnosed with "late stage" lung cancer and was advised against treatment by their doctors. They each subsequently sought 2nd opinions. One got cured and went on to live with gloriously good health for another 6 years. The other one got surgery recently and is now cancer-free.

Susan Z
what a nightmare ..
I don't believe most hospices would be so callous and I'm so sorry that you had this horrible horrible experience...

I didn't know there were hospice doctors (mine has only nurses).
You are wise to meet with other oncologists and to see what they can offer.

For Mom, the offered case management, med management and in the end, continual care and palative care. When Mom had her last stroke and went to the hospital for the last time, I decided that I didn't want her to do that anymore because having her gone upset Dad so. This way, he could be with her all the time he wanted and she could be around people who knew her and cared for her. No one at the hospital really knew anything about her. For me it was a blessing. I know that others have had trouble with hospice care and that's a shame. I really loved the agency that provided Mom her care. It was called Alpha Omega Hospice. They are still doing follow up with me, even several months after her death, offering counseling and advice. I love them.

Hospice nurses act under the direction of doctors--either in-house hospice doctors or the patients' own end-of-life-care doctors, no? (Do the nurses have the knowledge or authority to act totally on their own?)

I know that in Mom's case, the hospice company was acting on the advice of her PCP. But it was only pain management. She was on sub lingual pain meds. No tubes, no food. We kept her mouth moist. She had stopped eating anyway and was not conscience for several days prior to her death with the exception of occasionally moaning or crying out.

Susan
My sense is that it's mostly the hospice nurses that have the expertise but that they'll occasionally consult with my mother's former pcp if it's necessary.
Doctors are trained to cure, to fix (I'm told they often go on trying to fix long past the appropriate time) -- and usually are not given training in how to let go, to help with the dying.
I'll ask my hospice nurse how she perceives her role.
ps I looked up the new approaches that you're trying on your father-- what an exciting development in cancer care. They seem to be VERY new-- only approved this past year.

Brightwings:

It's called biological targeted therapy (that targets only the cancer cells), not chemo, and it does not have terrible side effects like chemo. It's been in research for the last two decades and was approved by the FDA in the past 2 years or so.

The bad thing about chemo is that the side effects are so terrible that it may not be worth it. But so far, dad's side effect is a skin rash that doesn't seem to bother him. Sure it's worth a try considering what the alternative is!