Hospice confusion.

[Kim O'Therapy, BSN, RN]

Dear All:

I have had to fly out of state because my mother has now been placed in hospice after a 5 year battle with IBC. I had to withdraw from this semester of nursing school ; but, I had promised my mother I would be with her when she died. It is very hard to detach myself from her care and "just be her daughter."

What has made this especially difficult is that she was in very poor shape (acute renal failure) in the ICU with tubes everywhere, systemic MRSA, endocarditis, an extraction rate of 20%, and she had to be intubated after respiratory arrest. Four docs told us the best place for her would be in hospice due to the need for pain control and her inability to ever have chemo again. We agreed because she had told the family she was "tired of fighting" and she had not been eating or drinking substantial amounts (which led to her admittance dx of acute renal failure). The intensivists weaned her off the respirator, removed IV fluids & vasopressors, and we brought her here (hospice) by ambulance.

I contacted her church and funeral home, etc, and had accepted what was to come. Then, the hospice doctor met with my family and basically indicated that her vital signs were good (WNL and better than they were in ICU) and maybe she should not be here. :uhoh21: Well, she has only been here 3 days. I guess I kind of felt like he was saying she's not dying fast enough. I don't know. But, after making such an agonizing decision about even bringing her here, that seed of doubt regarding our decision has now been planted and I'm a wreck. Am I killing my mother? Could she really recover? At this point, her ability to swallow is gone and she is on pain meds only - no IV fluids or NG tubes. She is on oxygen. For the past few weeks, she'd complained constantly of (L) arm pain and edema and she became very confused.

Here's the clincher: The hospice doc would "feel more comfortable" if he had medical proof of mets. There is none. Her oncologist just moved and the doc that took his place had not seen her yet when the renal failure occurred; however, she has battled two recurrances and mets to the lungs.

I just don't know what to do anymore. The nurses here are very supportive of our decision, but the doc doesn't seem to be on the same page as us. Frankly, I'm just worn out with the whole thing. I love her so much and the most satisfaction I got is when they moved her here and she became comfortable. She has only had breakthrough pain once and my father doesn't want her moved again. If anyone has any comments, they would be most helpful.

Anyway, thanks for letting me vent.

[jojotoo, RN]

This is so sad. Perhaps you need a better understanding of what hospice can offer your mother. I don't know if all hospices are the same or if there are different "levels". Maybe you could post this to the Hospice Nursing Forum.

I wish you the best possible outcome in a very difficult situation. Please accept my prayers for you and your family.

[bargainhound, RN]

There are Medicare guidelines for qualification for Hospice.

It looks like your mother meets them on more than one

diagnosis.

Hospice is definitely appropriate.

There are outpatient hospice programs also where she

could be at home with caregivers. Maybe that is what

the doc is thinking.

[bargainhound, RN]

There are four levels of care offered by hospice.

General home care.

Respite care. (two to five days inpatient care to rest the caregiver)

General inpatient care.

Continuous care (for the actively dying).

[seastar]

Dear Kim O'T

I am new to this group, but your situation just grabbed me and I had to respond.

Your descripition of all that you, your family and your mother have been through, her change in LOC, her discomfort and her stated desire to "let go" are things that the hospice doc has not witnessed.

What he is looking at, it appears, is a sort of by the book picture a hospice patient would ideally present in terms of vital signs.

It is fine for him to express himself in that way but I don't think it has much to do with your mother's condition.

Do you or your family really think it possible that there could be a turn around involving procedures that would not be painful, invasive and traumatizing through which your mother might gain a return any kind of quality of life worth living. If so, then you have a decision to make. If not I think your instincts, your families feelings and even the feelings of the nurses who are caring for her (and your mothers wishes for sure ) should be respected.

I can understand why this doctor's comments have been so disturbing at such a crucial time, but personally I think his comfort level is not the thing here.

I hope you can find peace of mind as you go forward with this. It such an important and meaningful time for you and for your mother.

SS

[gr8rnpjt, RN]

I think, given the history of her present illness, and in her present state, you have your Mom in the right setting. Do not despair what her Dr. is saying. Do not second guess yourself. Who knows why he is questioning her illness, but based on what you said, she is in the right setting. Did you mean that your Mom's ejection fraction is 20%? Based on everything you have said, she should be made as comfortable as possible, and that is only possible in a hospice setting in my opinion.

My thoughts and prayers are with you and your Mom. I cannot imagine the pain you both are in.

God bless you both

[Antikigirl, ASN, RN]

Through my history of dealing with MD's in these situations...well...I go with the hospice RN's all the way! Many MD's are very scared of the potential lawsuits surrounding death, and these can come and get you even after 7 years after death (Statute of limitations expires after 7 in most states). So they really want proof of pending end of life so they are covered from people saying "you just let them go" and suing them.

So with that in mind I find many doctors flutter back and forth on choices with hospice. However...hospice is excellent and needs to be understood by the MD community MUCH more than it is!

My hospice groups have two major groups...transitions which is someone that has more than 6 months like in the cases of cancer, the resources are a little more limited of course since. Then you have Hospice which is 6 or less months to live, and much is covered regarless of ablity to pay (there are federal/state/donated funds!). If you live beyond 6 months they don't just kick you out but reassess dependant on their parameters and sign you up again, or you can go on transitions for a while till you need the hospice.

No one dies the same, just as no one lives the same. Some people get home and do so much better because of comfort levels in their homes or facilities. The mind has so much to do with it...and is what hospice is geared for! I have had pts come back on hospice to live three months or longer after getting a very serious dx with days to live just because they are comfortable and have trusted loveing people around them. It makes a difference that MD's are not trained to see!

Sounds like your mother is in the perfect place for her needs, and I would have a sit down with the Hospice RN about your fears of MD's being a bit wishy washy. Not only do Hospice RN's treat the patient...but the family as well..and well...you need a bit of help too so you can be strong and healthy for your mom during this time .

My best wishes to you!

[leslie :-D]

there is nothing worse than having a hospice medical director, who has no palliative care experience.

they're the worst, most paranoid kind.

it 'sounds' like your mom would be perfect for hospice but the biggest obstacle may be the dr. being reluctant in prescribing adequate analgesia.

perhaps she is not in the terminal phase of dying and therefore, death is not imminent.

but please, keep her in hospice.

the hospice nurses will keep a close eye on her, and ensure all her needs are met, so she can live her remaining life in peace.

to my knowledge, ibc is aggressive, so her current needs will best be met w/hospice staying 1 step ahead.

with peace and prayer,

leslie

[heron, ASN, RN]

Hi ... so sorry about your mom ... I wish it was not being so hard for all of you. I work hospice inpatient and your situation reminds me of many similar situations I've run into over the years. I hope I'm not reading things into your post that don't belong there, but here goes ...

My first impression is that the doc was not necessarily implying that your mom should continue to "fight" or to seek curative care. Your mom has the right to decide when enough is enough and it is our (Hospice's) duty to respect that decision and to help her stay as comfortable and serene as we can while she passes in her own time and in her own way.

It is my understanding of hospice practice that inpatient care is reserved for those who are actively dying and for those experiencing acute symptoms that cannot be controlled in the home setting. It was never intended to be a long-term placement. This definition of care was set by the terms of the Medicare hospice benefit which is the payor for the majority of hospice care. If your mom is covered by a different insurance, ie Blue Cross/Blue Shield, the provisions may be different. However, most of us are conditioned to work to the criteria set by CMS and this may be where the hospice doc is coming from. I guess that the raw truth of the matter may be that your mom is, indeed, not dying fast enough to be eligible for inpatient care according to the criteria of her insurer. The way the Medicare program is written, the emphasis is on avoiding the most expensive setting - inpatient - when at all possible. The underlying idea is that being at home with family, without all the noise, intrusion and aggravation of a hospital/nursing home setting, is a more peaceful and comfortable way to spend one's last hours. This, of course, assumes that the family and the hospice organization are able to provide adequate physical/emotional/spiritual care and support in the home ... and caregiver breakdown is a common reason for admission to inpatient settings. The hospice program social worker, doc, your mom's primary nurse are all folks that can help you understand better the reasons for the doc's comments and where your mom and the family need to go from there.

For me as a hospice nurse, it is important to remember that attending someone during her dying days is a lot like attending a pregnant woman awaiting birth ... unpredictable, always uncertain as to when or how the event will occur ... the best approach is to meet the need of the moment as best we can and be ready to shift when necessary.

This got wordier than I wanted and I'm not sure it made sense ... feel free to private message me if I can help in any way ... heron

[Kim O'Therapy, BSN, RN]

Thank you all so much for your replies. They have added comfort for sure. I also took the advice of taking care of myself. I slept at my parents' home last night instead of on the hospice pull-out bed in my mother's room. I feel a bit more energetic and I might actually do my hair and put makeup on today. Again, thanks so much - I've never had to do this before and you've been enlightening.

[TazziRN, RN]

Is he the only choice for a physician at the hospice?