Hospice Question

[dianew]

Our group medical insurance coverage renews Jan 1, and we are looking into a new plan - good rate and decent coverage. One item though has me worried. Hospice care is limited to 14 days total lifetime, inpatient or outpatient. Not that I am thinking I will be needing hospice in the near future, but obviously none of us knows what may happen, and for me this could be a big deal. The other coverage we are looking at covers hospice at a percentage like they do everything else, but it is more money and overall not as good coverage.

Does anyone know whether or not 14 days of hospice care is the norm? is it sufficient for most patients? or is it not nearly enough and I would wind up bankrupting my family?

Any thoughts or information would be appreciated.

Diane

[dianew]

Katie: Thank you so much for your response. That was really exactly what I needed to know. I was afraid it was kind of a foolish question, but I really don't have any experience with hospice care and wasn't even sure where to go for the information but here. I will definitely look into the home health care coverage.

Thank you,

Diane

[fillise]

Diane,

My question would be similar to Katie's. Do you think they are making a distinction between an in-patient hospice facility and at-home hospice care? I thought insurance companies loved hospice because it kept people out of the hospital. I hope you find that it will be covered, just in case. You really don't need to be worrying about that.

Susan

[michellep]

I was told when I had to call hospice in for my husband that medicare covers the costs 100% at the earliest of 60 yrs old. Before hospice was called in we used our private insurance for nursing and health aides. It was very difficult to say the least on getting our insurance to approve these visits. I don't know your age, but if your at least 60 yrs old, I would suggest calling medicare and asking.

Having hospice in at the end for my husband was a blessing. They treated both of us with lots of caring and love which was a world of difference from our private insurance company.

[ginnyde]

Diane,

Earl was under hospice care for about 6 weeks. He was at home so we did not use any hospice facility. An aide came about every other day to bath him and change his sheets. He was totally bedridden so I could not change the sheets. The hospice nurse maybe came once every 10 days. So I guess what I am trying to say, while our insurance did cover it, the expense with him being home could not have been that exorbitant with the amount of care they provided. They did give me a kit with a lot of meds in it they we used vitually not at all.

[dianew]

Thanks to everyone for all your great information.

It seems to be hard to really pin down anyone at these insurance companies. What little I've found out is that it seems to depend on exactly how your doctor writes the order. A person is entitled to 130 visits a year of home health care (on top of the 14 days of hospice), which presumably could be used if all you need is assistance for your family members. It does say 14 days of hospice inpatient or outpatient -- so am not totally clear on that one and can't get anyone to offer a definite answer.

I am 62, but not entitled to medicare for another almost 3 years (I never thought I'd be excited about turning 65 - but can't wait). I'd thought about disability, but with the 2-year wait for medicare, couldn't afford to be unemployed and out of insurance altogether. I can work 20 hours a week (which is about all I can handle) and still maintain my insurance.

I think I'm going to go with the better plan and have a little faith that I won't be needing hospice this year -- or next either for that matter!

I knew I could count on everyone here for great info. Thanks so much.

Diane

[michellep]

Diane,

It's always smart to look ahead but also remind yourself that you are currently stable. That's such a wonderful thing!

I wish only the best for you and you're family.

(((hugs)))

[Barb73]

Finally, I see that when you are in hospice, the end is in view?

How very sad.

I think Bill and I need to rethink the word hope.

Barbara

[michellep]

Barbara and Bill

((((hugs and prayers))))

PS You both look so sweet in that pic

[dianew]

Michelle- thanks for the reminder. Sometimes I spend too much time "thinking ahead" and need a swift kick in the you-know-what.

Bill & Barbara - just read Bill's Story and am in awe of both of you. 5-year anniversary in 3 days -- what an inspiration you are!

[Barb73]

When Bill entered hospice, it was on a "needs basis." We have yet to understand what that means exactly. We will probably know more about that as we go along.

The 100% coverage on the meds are on any meds that are related to the cancer. For example, his clotting med (Warfarin) is covered due to the clots being chemo related.

The healthcare worker comes every day for two hours and bathes Bill. Though we don't use it, if need be, she would do any laundry belonging to Bill.

The kit they give has meds for pain. Only used the morphine once when transferring to a higher-dose fentanyl patch. Since it put him out of commission for a day, we will only use that for emergency pain.

The bed is a life saver due to its having a waterproof air mattress. It can be placed anywhere needed for easy facilitation. The nurse comes once a week (at this point) and checks for vital signs, and general observation.

Bill still goes to the oncology doctor once a month for a blood evaluation and checkup. Any palliative treatments will be sought through the cancer center.

The hospice is, I was told, done on a state-by-state basis. For example, New Jersey would have features that another state might not. (I didn't know that.)

For example, if Bill were to receive palliative treatments, he would have to be removed (on paper) from hospice and returned when the treatments were completed. Another state might not require that movement.

They will provide a person to come and stay with Bill if I were to need to go somewhere. We haven't used that feature as yet. There are volunteers who dovote time for that purpose.

If there were a need for my requiring a week for any good reason they would put Bill into their facility which provides care outside the home.

The healthcare worker is a blessing because she helps me to talk to another human during the day in addition to bathing Bill. It helps keep me sane. "Four walls .....". It's someone, other than family, who "changes the scene" a bit.

If I think of any further information I'll add it to this posting. I'm sure I have forgotten something along the way.

Diane, yes, you are right. On December 4, it will be five years since Bill's diagnosis. Just to note something important - "never, never give up." That is not to say we cannot look ahead (that is wisdom), but in your heart, hold onto hope. It is my belief that it is the reason, that along with prayer, that Bill is still here and doing as well as he has.

Bill still climbs the stairs to the upstairs bath, and still goes to the store with me (on occasion). He moves slowly and deliberately (uses a cane - resists the walker), but has not "taken to the bed," as yet. When going for the doctor's appointment, I bought a trasport chair (small, light and fits into our car trunk). The wheelchair hospice provides is much larger and not easy for me to use. He cannot wheel himself due to the right shoulder metastasis.

Wishing you the very best,

Barbara

[dianew]

Barbara -

I can't thank you enough for taking the time to send me all of the information about how things are going for you and Bill. It really made things clearer for me. I have read your post several times, and after much thought have come to the conclusion that while everyone's situation is different, I would really hate it for my husband not to have the option and the help available that you and Bill have. Naturally, the same policy that limits hospice to 14 days, also limits home health care, and nursing home care even more drastically.

I admit I tend to be a "worry wart", and it doesn't help that my next scan is on Monday, but no matter how the scan comes out I know I would rest better knowing that if it was ever required my family would have all the help they would need. Somehow I will just have to figure out how to pay for the more expensive policy.

I know it's a day early -- but CONGRATULATIONS to Bill (and you) on his 5-year anniversary.

Diane

[Barb73]

Thank you, Diane.

First, may I wish you a good scan on Monday. Scanxiety is something we all go through, but know that we are all with you "in spirit."

If I think of anything further that might be helpful regarding the hospice question I will post it in this thread.

Friends of mine, who have been through the cancer journey, told me that I needed the help. I would have resisted the hospice suggestion because there is that independent streak which is innate within.

Both childhood friends have known the journey, and have kept me on track to be realistic, along with a certain hope which fits the situation.

They came along once again, later in my life and are with me through this for a reason. They are both older (in their seventies) and know the limitations of the physical at that age.

I am quite strong (can open any jar with bare hands) but when lifting a very weakened person, it's extremely scary. Bill has had a few bouts with not being able to negotiate movement easily. This has occurred off and on at various intervals.

Tomorrow will be a special day because it says "take stats and ignore them." Bill was stage IIIB/IV within the first year of his diagnosis.

One facet that I overlooked mentioning is that our particular hospice re-evaluates the patient every 3 to 4 months to see if there has been a change. As mentioned in a prior post, each state may be different.

One patient, the nurse told me, was leaving hospice due to a vast improvement in condition. Of course, I don't know (and didn't ask) what his medical problems were.

To all who are fighting: It's worth every single minute of the work put into it. Many good times have been reaped, and we wouldn't change a thing. We tried not to look at the negative, but to always try to keep hope alive and kicking.

We will all know when to stop, but we hope that we do so only when appropriate for us.

Barbara